1st Annual SCCSF Golf Tournament gets “Up And Down” for

Sclero Sun
The
1st Annual SCCSF Golf
Tournament gets “Up And
Down” for Scleroderma!
On a beautiful day in September, members and supporters
of the Southern California Chapter of the Scleroderma
Foundation converged on the rolling hills, green fairways
and slick greens of the Jack Nicklaus-designed 18 hole
Dove Canyon Country Club in Orange County for the 1st
Annual “Fight For Lexi” Charitable Golf Tournament.
With an overflow crowd, the players went out to shoot their best
scores while raising over $90,000 dollars in support of Lexi Pettit,
the Chapter, and its tri-fold mission to support, educate and research
the disease known as scleroderma.
After being diagnosed with juvenile scleroderma in 2008, the Pettit
family set out to make a difference, not only for their 17 year old
daughter Lexi, but for everyone whose lives have been turned
upside down by a diagnosis of scleroderma. Teaming up with the
creative endeavors of the Southern California Chapter, led by Brian
R. Adams, the Pettits and the Dove Canyon Country Club Staff set
out to assure that everyone would have the very best of times in a
magnificent setting, doing the important work of raising funds while
having fun to combat scleroderma in all its forms.
The tee boxes, festooned with signs from the many sponsors of the
event, were soon the sight of controlled pandemonium as one group
after the next hit their shots down the fairways or, as often as not,
into the roughs and lakes of the well-maintained, devilishly difficult
golf course. Closest to the pin awards were planned for some of the
par 3’s and there was a longest drive fairway, but that was mainly
for the serious golfers among the groupings, seriousness being
something that often was in very short supply!
After many hours of happily chasing their balls past waterfalls and
water hazards, through trees, traps, over multi-leveled greens and
into the hole, it was time to retire into the clubhouse for revelry and
rewards and to add up what for some would be astronomical scores
and others, the sweet memory of a round well played, all for a great
cause, a great girl, and a great organization.
The SoCal Chapter Introduces It’s New
Patient Services Director
My name is Karen Gottesman and I’d like to introduce a brand new 2010 program/service offered from
the So Cal Chapter. As Patient Services Director, I’ll be introducing and implementing new programs to
enhance patient support for all our patients in Southern California. Plus, I’ll be available for one on one
patient support to help you with any of the day to day concerns you face each and every day. Keep an eye
out for tele-seminars you can do right out of your house in your jammies. Or, for some of our old-timers,
share your experience and offer some guidance for our newly diagnosed patients through our new peer
mentoring program. Stay tuned — more information on these exciting new programs is on its way.
While many of you already know me from the So Cal Chapter as a long-term board member, fundraiser,
event planner, patient advocacy czar, or from my book, The First Year Scleroderma, it’s time to wear a
new hat. And this hat’s for you.
To all our patients new and old, we’d love to hear from you — comments, questions, concerns, or just to
say hello — we’re here for you.
The ScleroSun Winter 2010
Scleroderma Foundation
Tel: 310.477.8225
Southern California Chapter
Fax: 310.477.8774
11704 Wilshire Boulevard, Suite 250
www.sclerodermasocal.org
Los Angeles, CA 90025
sclerodermasocal@hotmail.com
Southland Scleroderma Gala A Great Success
On Saturday evening, November 7, the Southern California
Chapter of the Scleroderma Foundation was proud to
present its 13th Annual “Key To A Cure” Gala at the
beautiful Manhattan Beach Marriott Hotel.
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all in vogue as long-time supporters and those new
to the Foundation and its activities gathered from all
across the Southland, comparing notes and experiences
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transported by the bright lights and pulsing music of the
Wayne Foster Group, back again by popular demand
to set the tone with a terrific evening of singing and
entertainment. The many extremely talented singers, dancers and musicians mingled
with the crowd and created an amazingly high energy pace to propel the night along. Adding to the lovely
presentation were floral arrangements and beautiful decorations provided by event coordinator Jennifer
Broas and the Garden of Eden Floral Designs, who pulled out all the stops to create an air of sophistication
and elegance.
Leading off the night, the Honorary Emcee for the evening, Chapter President Dr. Daniel Furst, was proud to
present our most important recognitions of the year. Leading the list of deserving recipients was Dr. John
A. Belperio, MD of UCLA, who received the Spirit of Leadership Award for his contributions as a physician
to the scleroderma community. Next came the Inspirational Spirit Award, which was given to Joe and Arline
Wetter for their outstanding work with patients and with the Chapter educational programs. The annual Janie
S. Benner Memorial Spirit Award went to Holly Hauser, MD, of Scripps University, recently diagnosed with
Systemic Sclerosis and already making a big contribution to the Southern California Chapter. The Message
of Hope Award went to Actress Kellie Martin for her ongoing work in the field of Auto Immune Disorders
as a national spokesperson for AARDA and as a friend of those with scleroderma. Also awarded was Jim
Parisi, recognized for his incredible contributions to the “Fight for Lexi” Golf Tournament. Finally, though
unable to attend to accept the Key To A Cure Award, representative Linda Sanchez, a committed Southern
California Congresswoman who actively stumps for scleroderma legislation, sent her thoughtful greetings
and thanks. In addition to our awardees, we recieved greetings and encouragement from Robert Riggs,
new Chief Executive Officer for the Scleroderma Foundation, visiting the West Coast from the home office in
Danvers, Massachusetts.
After a sumptuous dinner, tempting desserts and a frenetic evening of imbibing, dancing and raising money
for a great cause, the members, friends and supporters of the Southern California Chapter of the Scleroderma
Foundation capped off a very successful year of activities with the promise that 2010 will be even better still!
1st World
Scleroderma
Congress
Slam Dunk For
Scleroderma
April was a difficult month for Kayla DuFour and her family.
That was when her mother, Loretta, went to the hospital after
suffering cardiac arrest and kidney failure as a consequence
of her ongoing eight year long battle with scleroderma.
Doctors, researchers and people interested
in Systemic Sclerosis will be traveling from
all over the globe to attend the 1st World
Scleroderma Congress in beautiful Florence,
Italy February 10–12, 2010.
The meeting, a dual event, co-chaired by Chapter President Daniel Furst, M.D., will consist of a three-day
congress for doctors, and a one-day event for patients and their families at which rheumatologists will
address issues for those who are affected by scleroderma.
The occasion is being planned as a first-of-its-kind networking event for scleroderma physicians and
patients from all over the world as much as an information-gathering event. All lectures and events will be
conducted in English. The patient congress will be held on Friday, February 12 from 10 a.m. until 4:30 p.m.
Before and after, visitors will be able to tour the city on planned excursions or break off to enjoy the city’s
views, dine at its fine restaurants, eat gelato while crossing the Ponte Vecchio, tour the Boboli Gardens,
the Uffizi museum and the Pitti Palace, to name just a few of “Firenze’s” many treasures. In addition, those
willing to brave the Italian Train System are a short ride to the city of Pisa and the hillside towns of Siena
and San Gimignano.
For registration and accommodation information, go to http://www.aim-internationalgroup.com/2010/
sclerosiscongress/ and click on the “Patient Registration” and “Accommodation” links on the left side of the
page. The Web site also shows you the patient education program.
See you in Florence!
Advocacy Program
Continues to Build
Momentum
As things turned out, Kayla and her family were not alone in
their hospital vigil. As the President of the Associated Student
Body (ASB) at Martin Luther King High School in Riverside, the
popular coed was inundated with supporters and well-wishers
who literally camped out at her side as they awaited word
about her mom. Through long hours of aching concern, Kayla
never felt alone.
Slipping into a coma, Loretta fought valiantly back and was
slowly able to recover, but not before scleroderma had caused
permanent damage to her kidneys.
Thankfully, Loretta was able to regain consciousness and begin
her recovery from the crisis, but unfortunately, she now has to
utilize medications and perform peritoneal dialysis every night
to cleanse her blood of impurities while being evaluated for a
possible transplant.
As a direct consequence of Loretta’s ordeal and Kayla‘s deep
concern, the ASB decided to stage a basketball fundraising
event at the high school and dedicate it to helping Loretta and
the Scleroderma Foundation. Pitting the Seniors against the
Faculty, the school of over 4000 students was able to almost
completely fill the gymnasium for the contest.
What ensued was a great time for a great cause! A loud and
fiercely fought battle all in good spirit to raise awareness of
scleroderma. The sound levels went straight off the meter!
Everyone had a wonderful time. Through ticket sales and other
fundraising (and fun having!) endeavors, the kids managed to
raise almost $2,000, all the while cheering on their friends and
playfully jeering at the teachers.
On July 30, Senator Kirsten Gillibrand (D-NY) introduced
scleroderma-specific legislation in the U.S. Senate.
S 1545, the “Scleroderma Research and Awareness Act”, is a
companion bill to H.R. 2408, the version of the bill which was
introduced by Representative Lois Capps and is being considered
in the U.S. House of Representatives.
The text included in both pieces of legislation is the same. Each
bill calls for significant increases in scleroderma research funding
at the National Institutes of Health (NIH) and for significant increases in funding for public awareness of
scleroderma by the Centers for Disease Control and Prevention (CDC).
Having two pieces of scleroderma-specific legislation in the U.S. Congress is a significant step forward in
the Foundation’s effort to get scleroderma-specific legislation passed in the U.S. Congress for the first time
ever. Within a seven-day period, H.R. 2408 picked up 10 congressional co-sponsors, which brings the official
number of co-sponsors to 77.
More importantly, everyone in attendance was made aware
of the serious nature of scleroderma and the work of the
Foundation as it fights this terrible disease. In fact, Loretta
and Kayla report that the mother of another student, herself
suffering effects of scleroderma, found that she was not alone
in her struggle and is now attending informational meetings as
a direct result of having been at the game.
Thank goodness Loretta has managed to pull through for
now, though as we all know, she will always have her guard
up against scleroderma. With the help of a loving family and
Martin Luther King High School, she has quite a team to help
see her through.
The Foundation’s Advocacy Program could not be more pleased with the progress it has made in 2009 in its
ongoing effort to increase funding for scleroderma research and increase public awareness of the disease.
For further information about the two bills and about the Advocacy Program, please visit the Foundation’s
Advocacy Web page at www.scleroderma.org/advocacy.
The secret to creativity is knowing how to hide your sources.
– Albert Einstein
The nearest way to glory is to strive to be what you wish to
be thought to be. — Socrates
Page 2
Winter 2010 The ScleroSun
The ScleroSun Winter 2010
Page 3
Recent Breakthroughs In The Treatment Of Lupus
From the Editor…
Congratulations everyone!
Together, we have enjoyed another very successful year in our ongoing
efforts to raise funds in support of the Scleroderma Foundation. Our
Southern California Chapter has raised almost $500,000 in 2009,
proving that our commitment to the tri-fold mission of research,
education and support has not wavered.
We as an organization have been very busy, continuing the traditions
we have established over more than a decade of activities in support
of our very important cause.
Sclero-Sun Editor Bob Rich
Our annual Walk-A-Thon, which draws more than a thousand participants from all over the Southland,
continues to be a fantastic way to enjoy a day of raising awareness of scleroderma while frolicking in
the park.
B Cell Depletion Therapy
Effective for Systemic
Lupus Erythematosus
Doctors from the University College of London, a new form
of immunotherapy called B cell depletion therapy using the
drugs rituximab, cyclophosphamide, and methylprednisolone in
combination is effective for treating patients with systemic lupus
erythematosus (SLE), according to a recent report in the journal
Arthritis & Rheumatism.
Based on an exciting new approach, B cell depletion therapy offers
a genuine alternative to standard immunosuppression, according
to Dr. David A. Isenberg. He and his collegues reported on the
clinical and serologic outcomes and the long-term safety profiles of
B cell depletion therapy in the first 50 SLE patients that they have
treated with rituximab.
Nineteen of 45 patients achieved remission after one cycle of B cell
depletion therapy, the authors reported, and a further 21 patients
reached partial remission after 6 months of follow-up therapy.
B cell depletion therapy was associated with a decrease in
symptomatology and the serologic markers that indicate disease
activity.
The median time to B cell repopulation was 6 months, the
researchers noted, but 15 patients experienced a prolonged period
of B cell depletion lasting more than 12 months. One patient
remained B cell depleted 7.5 years after 1 cycle of B cell depletion
therapy.
Twenty of 25 patients who experienced a disease flare were retreated with B cell depletion therapy, and the results appear to be
similar, but with a tendency for the clinical improvement to last
even longer.
The clinical researchers involved with the breakthrough waited
to re-treat until a B cell depleted patient experienced a flare of
symptoms because it was shown that it may be as much as 5 years
after B cell depletion therapy before the disease activity returned.
According to Dr. Isenberg, the patients included in the initial study
continue under long term follow-up, and new patients are being
added at this time.
Lupus Drug Passes Key Test, Researchers Say
The experimental treatment Benlysta greatly reduced symptoms of lupus, says Human Genome
Sciences. The findings offer hope that after a 50-year period of few new therapies and a string of
disappointing failures of potential treatments for lupus, researchers have found an experimental drug
that can ameliorate the symptoms of the life-threatening autoimmune disorder that afflicts as many
as 1.5 million Americans.
In new reports released by a team from Human Genome Sciences, the experimental drug Benlysta
significantly reduced lupus symptoms in a randomized trial of more than 850 patients, reducing their
need for debilitating steroids and improving quality of life.
In recent years, at least seven companies have reported failure or unimpressive results with potential
lupus treatments, causing a cloud of gloom to settle over the lupus community. “We have had many
disappointments, so for a new drug to finally make it through the door with a very significant success
rate is an extraordinary accomplishment,” said Margaret G. Dowd, president of the Lupus Research
Institute, who was not involved in the research. Not only does the trial offer lupus patients the hope
of a new treatment with fewer side effects, she said, but it should also offer encouragement to other
companies with lupus drugs in the pipeline.
“It’s very exciting to finally have a trial in lupus showing efficacy. We’re going to have to work with it
longer to understand when it should be used and exactly who is going to benefit from it, but we are
very pleased to have a drug that looks as though it really did do something,” said Dr. Betty Diamond,
chief of the Autoimmune Disease Center at North Shore-Long Island Jewish Health System’s Feinstein
Institute for Medical Research in Manhasset, N.Y. and an advisor to the Lupus Research Institute.
Lupus is a chronic inflammatory disease that occurs when the body’s immune system attacks its
own tissues and organs. As many as 90% of patients are women, usually in their 30s and 40s when
it first strikes. No two cases of lupus are identical, but symptoms can include fatigue, fever, joint pain,
stiffness and swelling, rashes, skin lesions, mouth sores, hair loss and chest pain. The disease can
attack many internal organs, leading eventually to death.
Only three drugs are approved for treating lupus; aspirin, the steroid prednisone and the antimalarial
drug Plaquenil (hydroxychloroquine), and all were approved during the Eisenhower administration. All
can have severe side effects, including stomach bleeding for aspirin; weight gain, bruising, high blood
pressure and diabetes for prednisone; and vision problems and muscle weakness for Plaquenil.
The All-In-For-Scleroderma poker game continues to tempt the gamblers among us to test their luck
while making a buck for the cause.
The new “Fight For Lexi” golf tournament has added a new and exciting summertime experience that
attracted over 200 swingers and supporters to its inaugural event.
The Lion’s Club Bar-B-Que and Dance continues to attract a crowd to eat up for scleroderma.
Vertical Cure for Scleroderma continues to tempt ski loving fundraisers with a day of Alpine downhill
glory at beautiful Mammoth Mountain.
And, of course, the annual “Key To A Cure” Gala and silent auction represents the festive highlight of
the year, as hundreds of friends and supporters come together to celebrate, to contribute, and to party.
While we have been busy doing our part to raise needed funds for our educational programs and
scientific goals, one of the reasons we also do could not be more apparent. Arguments have been
raging around us for months now to determine the shape of healthcare in the future, and there is little
doubt that we must have a political voice or scleroderma could be forgotten and continue to be an
“orphan“ disorder.
Thanks to the research efforts of scientists funded in part by the Scleroderma Foundation, new
medicines will be discovered and treatment protocols established that can have a tremendously
positive impact on the outcomes of people with our disease. As such will be the case, our political
outreach and awareness programs will help to make sure that every one of us has access to these
lifesaving measures as they become available.
Remember, with our advocacy programs, we have prominently asked to be heard and understood. It’s
not just our money that does the talking. It must be us!
So while we celebrate another great year and the ability of the Chapter to raise much-needed funds
with many excellent activities developed for our enjoyment, don’t forget that letters from you to your
congressional representative speaking out in favor of scleroderma can and will make a huge difference
for our cause.
Have a Happy, Successful New Year!
Bob Rich and the ScleroSun
Wax Up The Skis For
Vertical Cure
If you, your friends, or members of your family have a certain
need to throw yourselves off mountains and call it fun, risk
life and limb dodging boulders and conifers while balancing
on slivers of polished fiberglass, subject fingers, toes, ears,
nose, and other appendages to the cold and frost, you
may just consider doing it while sponsoring a Scleroderma
Foundation tradition.
Vertical Cure, the premier Scleroderma alpine skiing
fundraising event, is once again challenging participants to
ski as many vertical feet as possible in one action-packed
day while raising money for a good cause.
The day of dedicated shredding and fundraising is thanks
to the vision of Southern California Chapter member Chris
Corman, an avid skier and outdoorsman, whose life was
forever changed when his mother, Annette Clayton, was
diagnosed with scleroderma. He and his amazing group of
schussing companions have taken on the mission to raise
awareness of scleroderma as well as secure charitable
pledges to support research for the disease.
Over the past 7 years, the event has tackled the manicured
slopes of magnificent Mammoth Mountain to raise hundreds
of thousands of dollars for the Scleroderma Foundation as
participants have skied over 6.4 million feet for the cause,
and have had a great time doing it. The big day of ups and
downs attracts a terrific group with one thing in mind, finding
a cure for systemic sclerosis in all its forms.
So if downhilling, traversing and side slipping for scleroderma
sounds like a good time, or to sponsor a skier while relaxing
in the warm comfort of your home, contact the Chapter office
at 310-477-8225, to register on-line or donate, please go to
http://www.firstgiving.com/verticalcure or write to Vertical
Cure, 4630 Marloma Dr. Palos Verdes Peninsula, CA 90274
for more information on this wonderful, wintry way to raise
awareness and funds.
Benlysta, a monoclonal antibody known generically as belimumab, is an immune protein produced
artificially. It binds to and blocks the activity of a protein called B-lymphocyte stimulator. Elevated levels
of B-lymphocyte stimulator are believed to contribute to the production of antibodies that attack the
patient’s own organs.
Dr. Daniel Wallace of UCLA’s Geffen School of Medicine treated lupus patients with the drug in an
earlier study and has been continuing to treat them, some for as long as four years. “They keep getting
better and better,” he said. “This is going to be a major breakthrough, no question about it.”
The secret to creativity is knowing how to hide your sources.
– Albert Einstein
The nearest way to glory is to strive to be what you wish to
be thought to be. — Socrates
Page 4
Winter 2010 The ScleroSun
Page 5
Innovative Approach to
Identify and Treat Lung
Fibrosis
Scientists at San Francisco-based KineMed, Inc., have
described a new way to measure changes in the rates of
deposition and breakdown of connective tissue. The methods
may enable the discovery and development of drugs to treat
a range of life-threatening diseases in which excessive
deposition of collagen leading to organ dysfunction plays
a key role. It is hoped that these advances will lead to
clinical trials for better treatments for such conditions as
scleroderma, cirrhosis, and pulmonary fibrosis.
The Spleen
Gets Some Respect
Chemicals in Our Food,
and Bodies
Reporting in a recent issue of the journal Science,
researchers from Massachusetts General Hospital
and Harvard Medical School describe studies
showing that the spleen is a reservoir for huge
numbers of immune cells called monocytes, and
that in the event of a serious trauma to the body,
the spleen will disgorge, or vent, those monocyte
multitudes into the bloodstream to tackle the crisis.
Your body is probably home to a chemical
called bisphenol A, or BPA. It’s a synthetic
estrogen that United States factories now
use in everything from plastics to epoxies
— to the tune of six pounds per American
per year.
That’s a lot of estrogen.
More than 92% of Americans have BPA in their urine, and scientists have linked
it, though not conclusively, to a variety of health disorders.
“The parallel in military terms is a standing army,”
said Matthias Nahrendorf, an author of the report.
“You don’t want to have to recruit an entire fighting
force from the ground up every time you need it.”
Now it turns out it’s in our food.
Ulrich H. von Andrian, an immunologist at Harvard
Medical School, agreed that the findings were a
surprise. “If one had to guess the source of these monocytes, one would have thought it likely that they were
mobilized from the bone marrow rather than from the spleen,” he said. “The discovery adds another layer of
complexity not previously associated with that organ.”
The latest work also sounds a cautionary note against underestimating the spleen or dismissing it as
disposable or past its prime.
Spleens can rupture during sudden compression events, such as contact sports or in motor vehicle accidents.
The new findings in no way counter the necessity of excising a ruptured spleen, but they do suggest that
the loss of the organ is more than a mere inconvenience, as it has often been depicted, and could help
explain previous reports showing an enhanced risk of early death among people who have undergone
splenectomies. In one study that appeared in The Lancet in 1977, splenectomized men were found to be
twice as likely to die of cardiovascular disease as were the men in a control group.
In KineMed’s new method, humans drink heavy water, a safe,
non-radioactive isotope of water. This heavy water serves as
a building block for collagen newly synthesized during a given
period of observation. By then isolating collagen from small
biopsies of the tissue of the subject and using very sensitive
mass spectroscopic analysis, rates of collagen synthesis or
destruction can be measured precisely and rapidly – in days
to weeks instead of the months to years previously required.
Fibrotic diseases, characterized by an accumulation
of excessive collagen in tissues, is a process akin to
exaggerated wound healing in response to tissue injury.
Currently, there is a clear lack of effective therapies to
treat diseases characterized by fibrosis. One of the main
impediments to bringing forward new treatments for fibrotic
diseases has been difficulty in development.
Much of the difficulty comes from the variability in the extent
and rates of progression of the diseases and the fact that
organ dysfunction may take years to manifest after a slow
chronic deposition of collagen. As a result, clinical trials are
long, very expensive and the potential benefits of drugs have
been difficult to assess.
There are other reasons to hold the spleen in esteem. Researchers have determined that the spleen is like an
elaborate wetlands, a back bay bayou for filtering and freshening the blood. The spleen, unlike other organs,
has a so-called non-capillary circulatory system: as the blood flows in, it is dumped into puddle-like areas
called sinusoids, and to get back out it must squeeze between cells. That dumping and squeezing help filter
out blood-borne parasites and aging blood cells too brittle for compression.
The filtration process was well understood, but the spleen acting as a serious monocyte reservoir was
never considered before. In the new study, researchers began by looking at monocytes, the largest of the
body’s so called white blood cells. It was recognized that these cells are major repair workers. They remove
dead muscle cells, they start rebuilding stable scar tissue and they stimulate the generation of new blood
vessels. Within 24 hours after an injury to the body there are millions of monocytes congregating around the
damaged area, a sensible, desirable, speedy display of emergency preparedness, except that researchers
were puzzled by one big unknown: where did this hearty rapid response team come from? The numbers of
monocytes normally circulating in the blood were simply too low, nor was there enough time to manufacture
the amounts observed. The researchers searched one organ after another, until they checked the spleen
and found the monocytic mother lode. The numbers there were huge, 10 times higher than what was in the
bloodstream.
Nothing discovered changes the researchers’ understanding that monocytes, like all blood cells, are born in
the bone marrow and at some point migrate to the spleen, lured there by cues yet to be identified. There they
sit and wait, until aroused by chemical signatures of damage, when the cells surge forth without hesitation,
a reaction the researchers hope someday to understand well enough to control.
Consumer Reports magazine recently tested an array of brand-name canned
foods for a report in its December issue and found BPA in almost all of them. The
magazine says that relatively high levels turned up in canned soups, beans, even
fruit juices and some baby formulas. The BPA in the food probably came from an
interior coating used in many cans.
Should we be alarmed?
Over 200 scientific studies have shown links between low doses of BPA and
adverse health effects, according to the Breast Cancer Fund, which is trying to
ban the chemical from food and beverage containers.
While most of the studies are on animals, the Journal of the American Medical
Association reported last year that humans with higher levels of BPA in their blood
have “an increased prevalence of cardiovascular disease, diabetes and liverenzyme abnormalities.”
Many scholars have noted these increasing reports and are now specifically
calling on regulators to re-evaluate BPA. Last year, Canada became the first
country to conclude that BPA can be hazardous to humans, and Massachusetts
issued a public health advisory in August warning against exposure to BPA by
pregnant or breast-feeding women or by children under the age of 2.
The Food and Drug Administration is now studying the issue. “When you have 92
percent of the American population exposed to a chemical, this is not one where
you want to be wrong,” said Dr. Ted Schettler of the Science and Environmental
Health Network. “Are we going to quibble, or are we going to act?”
While the evidence isn’t conclusive, BPA’s prevalence is stimulating much
discussion and, lately, legislative actions. Bills now making their way through
congress may mitigate the problem by banning the ubiquitous substance entirely.
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Healthy Foods
Carry Hidden
Dangers, New
Study Finds
Everyone knows that they should eat
leafy greens, tomatoes and berries.
They’re packed with vitamins and
antioxidants and renowned as healthful
foods that Americans should eat
regularly.
Unfortunately, they are also among the
10 foods most likely to make you sick.
Researchers analyzing federal data collected since 1990 in order to identify the foods
that caused the largest numbers of food-borne illness outbreaks were surprised to find
that “green, fresh and natural” wasn’t always necessarily safe and healthy. The riskiest
foods were, in descending order: leafy greens, eggs, tuna, oysters, potatoes, cheese, ice
cream, tomatoes, sprouts and berries.
“These are food products that are being eaten every single day, and more often than
not people eat many of them in one day,” said Sarah Klein, a staff attorney at the
Center for Science in the Public Interest, which conducted the study. “It’s too bad that
so many of these products are healthy for us. Consumers can’t and shouldn’t avoid
these foods. And that’s the problem. Consumers can only do so much to make sure
they’re not getting sick. That’s why we need the food industry and the oversight of the
Food and Drug Administration (FDA) to do as much as possible to assure the public that
these products are arriving in our homes and our restaurants in a way that’s safe for
consumers.”
The foods flagged in the report were contaminated by a range of different bacteria, from
E.coli in spinach to scombrotoxin in tuna. People who ate contaminated foods suffered
a range of responses, from mild stomach cramps to severe, systemic complications
and even death.
Among the surprises of the study was the emergence of potatoes as a source of
food illness. More than 40 percent of contaminated potato products were prepared in
restaurants and fast food establishments, suggesting that in some cases bacteria might
be migrating to potatoes from raw meat or poultry via food handlers or improperly
sanitized equipment.
One in four Americans are sickened by food-borne illnesses and 5,000 die each year,
according to the Centers for Disease Control and Prevention. But many cases of foodborne illness go unreported, leading epidemiologists to believe the actual numbers of
sickened individuals is much higher.
As the weather turns colder here in the Southland, it becomes important to adjust
our thermostats to a level of comfort that suits the special needs of people with
Auto-Immune disorders such as scleroderma.
Due to the lobbying efforts of very determined patients and lawmakers here in
California, those who have a diagnosis can apply to their local gas and electrical
utilities for the “Medical Baseline Discount.“ You are legally entitled to this service!
There are no other qualifying requirements. Income is not a factor.
KineMed believes its new technique will provide a direct,
more informative way to assess the extent and rate of
progression of fibrosis by measuring the synthesis of
collagen in vivo in humans, speeding the process of bringing
forward new drugs to treat the many patients with fibrotic
diseases.
In order to receive this valuable service, you just need to call your utilities and
have them mail you a simple form to complete. Once your doctor fills out his
portion, it is mailed back, takes a few weeks to process, and then the discount
appears on your monthly statements.
Don’t delay, do it today!
He that waits upon fortune is never
sure of a dinner. — Benjamin Franklin
If you can’t change your fate, change
your attitude. — Amy Tan
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Winter 2010 The ScleroSun
The ScleroSun Winter 2010
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Possible Cause of
Chronic Fatigue Identified
A recent study published in the journal Science seems to have answered a question that medical scientists
had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic
murine leukemia virus-related virus, or XMRV.
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to readily infect
people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency,
lymphoma and leukemia.
The new study provided overwhelming evidence that XMRV is a human gamma-retrovirus — the third
retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma) known to
infect humans. Infection is permanent and, yes, it can spread from person to person, though it is not yet
known how XMRV is transmitted.
That would have been news enough, but there was more. XMRV has been discovered in people suffering
from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years.
For sufferers of this disease, the news has offered enormous hope. In the study, 67 percent of the 101
patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually
causes their condition, it may open the door to useful treatments.
Chronic Fatigue Syndrome became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several
hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological
problems, including severe memory loss and inability to understand conversation. Their doctors were
stumped.
Scleroderma Drug
Discount Card
FDA Issues Final Rules to Help Patients Gain
Access to Investigational Drugs
Don’t Sweat
the Small Stuff
A joint project of the Scleroderma Foundation and
NeedyMeds.org presents patients and their families a
new way to save on prescription medications with a drug
discount card.
The U.S. Food and Drug Administration has recently published two rules that seek to clarify the methods
available to seriously ill patients interested in gaining access to investigational drugs and biologics when
they are not eligible to participate in a clinical trial and don’t have other satisfactory treatment options.
If a miserable life feels longer,
here’s something to keep in
mind: People who appreciate
small moments of happiness,
laughter and joy through the
course of each day tend to be
happy people who are more
likely to be resilient against
adversity and more successful
in jobs, relationships and health
outcomes.
How does the card work? Every time you get a prescription
filled give the card to the pharmacist. He or she will check on
the discount and let you know how much you save. You can
share the card with your family members and friends. A copy
of the card (both sides) works as well as the original.
How much will I save? Savings vary for each drug and
range from nothing to as high as 80%.The pharmacist can
tell you how much you saved.
The new rule, “Expanded Access to Investigational Drugs for Treatment Use,” makes investigational drugs
more widely available to patients by clarifying procedures and standards. The other rule, “Charging for
Investigational Drugs Under an Investigational New Drug Application,” clarifies the specific circumstances
and the types of costs for which a manufacturer can charge patients for an investigational drug when used
as part of a clinical trial or when used outside the scope of a clinical trial.
Can I get a discount on anything besides prescription
medication? Yes, the card will help with some over-thecounter medications, even some prescriptions for your pets
that you fill at the pharmacy.
“With these initiatives, patients will have the information they need to help them decide whether to seek
investigational products,” said Margaret A. Hamburg, M.D., Commissioner of Food and Drugs. “For patients
seeking expanded access to investigational drugs and biologics, the new rules make the process easier to
understand.”
Can you track my prescriptions? No. All the cards issued
by the clinic have the same identification numbers. There is
no way to track anything about you.
Clinical trials are studies of drugs and biologics that are still in development and have not yet been approved
by the FDA. Many patients enroll in clinical trials to gain access to investigational therapies and contribute
to finding out how well an investigational therapy works, and how safe it is for patients. Obtaining a drug or
biologic under an expanded access program may be an option for some patients who are not able to enroll
in clinical trials.
Can I share my card with family members and friends?
Yes, we encourage it. Anyone can use the card. They don’t
have to be patients of the clinic.
What drugs are covered? There’s the possibility of a
discount on any drug. Your pharmacist can find the discount
when you get your prescription filled.
Does the card work at every pharmacy? The card is
accepted at over 53,000 pharmacies.
When, by 1987, the pocket in Tahoe failed to clear up and indeed continued erupting in other parts the
country, the Centers For Disease Control (CDC) got involved, but did not appreciate the seriousness of the
outbreak. Had the agency done nothing in response to this epidemic, patients might now be better off. They
ultimately attached the name Chronic Fatigue Syndrome to the disorder, which over time functioned as a
kind of social stigma. Patients were branded malingerers by families, friends, journalists and insurance
companies, and were denied medical care. Many people didn’t realize how severe the illness could be.
Marked by memory and cognition problems, patients often experience physical collapse after any mental or
physical exertion. Many patients are bedridden. Full recovery is rare. It is estimated that more than a million
Americans may have the disease. A significant number of patients have been ill for more than two decades.
What if I still can’t afford my medicine? There are many
programs that help people who can’t afford their medications.
All the information on these programs plus many others is on
the NeedyMeds web site www.needymeds.org.
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the
beginning. Now, Judy Mikovits, a retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who
led the recent study, is on the case.
Can I use the card if I have insurance? You can’t use
the card if you are using insurance, Medicare, or Medicaid
to pay for the medicine. However, you can use the card if
the drug isn’t covered by your insurance. You may find you
save more by using the card rather than your insurance. Your
pharmacist can help you find the best deal.
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer
Institute, knew little about Chronic Fatigue Syndrome. But she was intrigued that an unusually high number
of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias. She was also
impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 Chronic
Fatigue Syndrome tissue samples going back as far as 1984.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits said.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva.
She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer.
She expects the positivity rate will be close to 100 percent in the disease.
To support the effort to help these patients, the agency also is launching a new Web site where patients and
their health care professionals can learn about options for investigational drugs. In general, these options
include being treated with a drug that has been approved by FDA, being given an investigational drug as part
of a clinical trial, or obtaining access to an investigational drug outside of a clinical trial.
What if I don’t use the Internet? There are many places
that offer free Internet access and help such as your library
or senior center. You could also ask a friend or family member
to help you.
To order a laminated card, please call or e-mail Mary Ann
Berman at the Scleroderma Foundation, 800-722-4673 ext.
10, maberman@scleroderma.org.
The FDA has allowed expanded access to experimental drugs and biologics since the 1970s. That access
has allowed tens of thousands of patients with HIV/AIDS, cancer, and other conditions to receive promising
therapies when no approved alternative is available.
The study showed that happy people do not need to be happy
all the time or to deny the upsetting parts of life. But they do
seem to have an innate ability to put greater stock in small,
happy moments. Savoring these blips of pleasure in everyday
life, the study found, elevates one’s mood overall and leads to
more resilience against negative events.
So there’s something very positive to be said about those
who find a way to savor the sunny side of life, no matter how
cloudy it may seem.
For further information, go to:
www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm176526.htm
The Taxman Comes
Knocking...
Congressional Committee Calls
For Scleroderma Awareness
On July 30, the full Senate Appropriations Committee approved its Fiscal Year (FY10)
2010 Labor, Health and Human Services, Education, and Related Agencies (L-HHS)
Appropriations bill. The full Senate is now expected to consider the legislation as
lawmakers resume their fall schedule.
What is significant about this legislation is that scleroderma is one of only three diseases specifically
mentioned in the FY10 Appropriations recommendations to the National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS).
In addition, the Senate Appropriations Committee requests an update from NIAMS as part of its fiscal year
2011 congressional budget for justification regarding its scleroderma-related activities.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25
years, the discovery of XMRV as the possible cause of CFS can’t come soon enough. Still, while Dr. Mikovits
and her colleagues are excited with the possibilities of their findings, other experts are quite cautious to
characterize this discovery as the key. They note that viral causation has been suspected for years only to
lead to false starts.
The researchers reached this conclusion after a series of
studies that required participants to submit daily “emotion
reports” that gauged their emotional status in detail over the
course of the day.
“The final rules balance access to promising new therapies against the need to protect patient safety and
seek to ensure that expanded access does not discourage participation in clinical trials or otherwise interfere
with the drug development process,” said Janet Woodcock, M.D., director of the FDA’s Center for Drug
Evaluation and Research. “Clinical trials are the most important part of the drug development process in
determining whether new drugs are safe and effective, and how to best use them.”
The legislation, while not a funding bill, calls for taking measures to increase scleroderma public awareness.
“The [Senate Appropriations] Committee continues to encourage CDC to undertake steps to increase
awareness in the public and larger healthcare community to all for earlier diagnosis and treatment” of
scleroderma.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease
that has ruined lives,” Dr. Mikovits said.
So says the authors of a study published in a recent issue of
the journal Emotion, which was independently investigated by
researchers at UC San Francisco, the University of Michigan,
University of Pittsburgh and Cornell University.
…and what better way to write off a little bit of that hardearned income than donating to the fundraising efforts of the
Scleroderma Foundation here in Southern California. Uncle
Sam and the Internal Revenue Service continue to make it
relatively painless to give money for raising awareness of
scleroderma and to finding a cure for this terrible disease.
They know we take our tri-fold mission of research, education
and support very seriously. Our tax-exempt status means that
the government is helping us as we do the important job of
helping ourselves!
So don’t forget to make a timely tax deductable donation.
Checks can be made payable to Scleroderma Foundation/So.
Cal. Chapter (or “SFSCC”) and sent by mail to 11704 Wilshire
Blvd. #250, Los Angeles 90025, or you can phone in a credit
card number to the office at (310) 477-8225.
Remember, act before December 31 and take the opportunity
to lower your tax obligation for 2010 while supporting the
work of our wonderful organization.
Opportunity is missed by most people because it is dressed
in overalls and looks like work. — Thomas Edison
Don’t just believe in miracles - depend on them. — Laurence J. Peter
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Winter 2010 The ScleroSun
The ScleroSun Winter 2010
Page 11
In Memory of…
New Technique Used To Diagnose
Pulmonary Atrial Hypertension
It is with great sadness that the Foundation has learned of
the passing of Maureen Fleury after a long and courageous
battle with systemic sclerosis.
Spanish researchers from the Systemic Autoimmune
Diseases Unit at the University of Granada (UGR) have
developed an innovative system which will help doctors make
the earliest diagnosis of pulmonary hypertension possible,
which is the main cause of mortality for patients suffering
from scleroderma.
Maureen Fleury __________________
Maureen was diagnosed with scleroderma 21 years ago. In
her determination to thrive with the disorder, she became
a very strong supporter of the Scleroderma Foundation
and a significant fundraiser.
She and her family hosted the annual Lions Club BBQ
Dinner to the benefit of the Southern California Chapter and
were regular attendees of the Scleroderma Foundation’s
educational seminars and National Conferences.
In 2007 Maureen accepted an award from the Lions Club
for the club’s contribution to the Scleroderma Foundation.
For many years Maureen and her husband Thom
participated in the Whittier Support Group, regularly
attending meetings and taking on the task of mailing out
the group’s quarterly newsletter.
Previously married to Robert A. Wagner. In addition to
Thom, Maureen is survived by her three children and six
grandchildren.
Phil Tedesco ____________________
After fighting a long, hard battle, Phil Tedesco passed away
this last Summer from the many effects of scleroderma.
A long time resident of Corona, CA, Phil is survived by
his wife Janis and two sons, as well as numerous other
family members and friends. To them he will always be
remembered for his kindness and consideration.
The Foundation is thankful for the many donations it has
received in his name.
Judith Corvi_____________________
Probiotics: What’s What?
No to Soda!
When the label tells you the food you are buying contains “probiotics,” are you getting health benefits or
just marketing hype?
Soda, pop, cola, soft drink, whatever
you call it, it is one of the worst
beverages that you could be drinking
for your health. As the debate for
whether to put a tax on the sale of soft
drinks continues, you should know how
they affect your body so that you can
make an informed choice on your own.
Probiotics are live micro-organisms that supposedly work by restoring the balance of intestinal bacteria
and raising resistance to harmful germs. Taken in sufficient amounts, they may promote digestive health.
But while there are thousands of different probiotics, only a handful have been proved effective in clinical
trials, and there is no standard labeling requirement to help buyers make sense of probiotic products. The
word “probiotic” on the label is not enough to tell whether a product might be effective for any particular
health concern.
Until now, the only method to identify pulmonary hypertension
was to perform a cardiac catheterization, an invasive
technique consisting of the insertion of a hollow and flexible
tube (a catheter) through the jugular vein directly into the
right side of the heart. This technique is not advisable for all
patients because of its complexity and risk.
Lactobacillus is just a bacterium. To say a product contains Lactobacillus may mean little to one’s health. It
has been demonstrated that with probiotics, there are strain-to-strain differences and health benefits may
be small at best.
The advantage of this new system, which is based on
ultrasound technique, is that it allows specialists to measure
the pulmonary artery systolic pressure so that pulmonary
hypertension can be diagnosed earlier.
The research team from the University of Granada maintained
detailed medical records of each of 41 patients in order to
accomplish this study, which included data from both blood
and respiratory tests. An echocardiogram was performed on all patients while they were resting and after
physical effort on a special bicycle, called a bicycle ergometer.
From the results of this study, it has been concluded that there is a significant group of scleroderma
patients who present a serious increase of pulmonary artery systolic blood pressure when exercising.
These findings turn out to be among the very earliest evidence of pulmonary hypertension in scleroderma.
Thanks to this new discovery, early diagnosis and suitable treatment can be started to modify the
scleroderma cycle, thus improving patient’s prognosis significantly.
Given that pulmonary hypertension is a very serious complication of scleroderma, doctors stress the
importance of diagnosing it as soon as possible in order to control some of the symptoms ascribed to it,
such as breathing difficulty while partaking in physical activity, known as dyspnea.
The Spanish researchers say that using the bicycle ergometer while measuring the pulmonary artery
systolic pressure of the patient after physical activity and performing an echocardiogram are very reliable
methods, since they seem to help identify scleroderma-associated PAH earlier.
A case in point was the outcome of a recent legal case. Dannon, one of the biggest sellers of probiotic
yogurts, settled a class-action lawsuit recently over its Activia yogurts and DanActive yogurt drinks, which
claimed to help regulate digestion and stimulate the immune system. As part of the $35 million settlement,
Dannon agreed to reimburse dissatisfied consumers and make labeling changes, among them adding the
scientific names of probiotic strains it uses. Dannon says that it settled the suit to avoid litigation and that it
stands by all of its product claims. The company’s Web site lists numerous scientific studies of its patented
probiotic strains. “A scientific approach has been central to our business for decades,” said a spokesman,
Michael Neuwirth, who added, “The essence of the claims of Activia and DanActive remain unchanged.”
So what health problems can probiotics really help? A recent gathering of nutritional experts concluded that
there was strong evidence that several probiotic strains could reduce diarrhea, including that associated
with antibiotic use. Several studies have also suggested that certain probiotics may be useful for irritable
bowel syndrome.
Scientists continue to debate whether probiotics offer a meaningful benefit to the immune system. The
gastrointestinal tract is an important part of the immune system, and studies show that intestinal bacteria
play an essential role in immune defenses. These bacteria not only aid digestion but essentially help form
a protective barrier inside the intestine. While some research suggests that probiotics might be of value
for incorporation into the daily diet of healthy people for the purpose of staying healthy, the jury is still out.
Consumers interested in probiotics should look for products that list the specific strain on the label and
offer readers easy access to scientific studies supporting the claims. A good place to find studies on various
probiotic strains is the Web site www.PubMed.gov.
Cancer has sadly claimed the life of Judith Corvi, mother of
the Valley Support Group’s Jennifer Weldon.
The results of this new research confirms the importance of performing echocardiograms on all patients
suffering from scleroderma.
A strong supporter of her daughter and her endeavors as
she has battled scleroderma through various treatments,
including a stem cell transplant procedure, Judith sadly
succumbed to her own struggle with a deadly disease.
Some of the results of this research have already been published in the European Journal of
Echocardiography and Chest.
By her expressed wishes, donations in excess of $1,800
were made in her name to the Southern California Chapter
of the Scleroderma Foundation.
2009-10 Matching Gifts
Benefit The Foundation
Extensive testing has shown that polyphenols can help keep
blood vessels and arteries flexible and healthy, especially
the coronary arteries and the brain’s blood vessels, says Robert Krikorian, PhD, director of the Cognitive
Disorders Center at the University of Cincinnati.
As many members of the Southern California Chapter of the
Scleroderma Foundation have discovered, their employers and
other organizations throughout the Southland often sponsor
Matching Gift programs for their employees and associates,
and will match the charitable donations they make, whether
it’s for our annual Stepping Out For a Cure Walk, Key To A
Cure Gala, the new Golf Tournament, personal annual gifts to the
Foundation and Chapter, perhaps even for the All-In-For-Scleroderma
poker game!
Preliminary animal studies suggest that adding dark grapes to your diet may improve circulation and brain
function. What’s more, in a recent human study, researchers found that eating 1 or more cups of blueberries
every day may improve communication between brain cells, enhancing your memory.
Contact your employer’s HR Department for information regarding their
participation in a Matching Gift Program.
They say that regardless of how you eat them, eat them.
They’re good for you!
Joseph Zera ____________________
After a long and valiant battle with Malignant Melanoma,
Joseph Zera has sadly passed away.
Retired from the Community College system here in the
Southland after a long and successful career, Joe was a
devoted husband, father and grandfather.
A long-time member of the Ventura County support group,
Joe and his wife Angie were a steady presence here in
Southern California and strong fundraisers, participating
in the chapter’s Walks and Galas.
His many contributions and great sense of humor will be
missed by all who came to know him.
Eat Purple Food
Concord grapes, blueberries, blackberries: They all get
their deep, rich color from polyphenols — compounds that
appear to reduce heart disease risk and may protect against
Alzheimer’s disease, according to new research.
While studies have consistently pointed out the health benefits of these and other fruits, getting people
to add them to their diet is another matter. Researchers pointed out that there is greater usage of these
products of mother nature when they are formulated into juices, wines, yogurts and smoothies than in
their natural form and encouraged those with idiosyncratic tastes to seek out alternatives to satisfy their
particular taste buds.
Soft drinks contain little to no vitamins
or other essential nutrients. However,
it is what they do contain that is the
problem: caffeine, carbonation, simple sugars and sugar
substitutes, and food additives such as artificial coloring,
flavoring, and preservatives.
A lot of research has found that consumption of soft drinks
in high quantity is responsible for many health problems that
include tooth decay, nutritional depletion, obesity, type-2
diabetes, and heart disease.
Most soft drinks contain a high amount of simple sugars.
The USDA recommendation of sugar consumption for a
2,000-calorie diet is a daily allotment of 10 teaspoons of
added sugars. Many soft drinks alone contain more than this
amount! When you drink sodas that are packed with simple
sugars, the pancreas is called upon to produce and release
insulin, a hormone that empties the sugar in your blood
stream into all the tissues and cells for usage. The result of
overindulging in simple sugar is raised insulin levels. Raised
blood insulin levels beyond the norm can lead to depression
of the immune system, which in turn weakens your ability to
fight disease.
You may come to the conclusion that diet or sugar-free soda
is a better choice for your health. However, diet soda is filled
with artificial sweeteners such as aspartame, sucralose, or
saccharin. These artificial sweeteners can potentially pose
a threat to your health. Aspartame, for instance, commonly
known as Nutrasweet, is a chemical that stimulates
the brain to think the food is sweet. It has been found to
be indigestable for certain types of people and can cause
seizures and worse.
How about this problem? Beverages with bubbles contain
phosphoric acid, which can severely deplete the blood
calcium levels; calcium is a key component of the bone
matrix. With less concentration of calcium over a long time,
it can lower deposition rates so that bone mass and density
suffer. This means that drinking sodas and carbonated water
increases your risk of osteoporosis.
Add in the caffeine usually present in soft drinks, and you
can be in for even more trouble. Caffeine can also deplete
the body’s calcium, in addition to stimulating your central
nervous system and contributing to stress, a racing mind,
insomnia, and contributing to cardiovascular problems.
So, for goodness sake, skip the sodas!
Your donations to the Chapter, always appreciated, could very well be doubled!
It is good to have an end to journey towards; but it is the journey that
matters in the end. — Ursula K. Le Guin
Be so strong that nothing can disturb your peace
of mind. — Christian Larson
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Winter 2010 The ScleroSun
The ScleroSun Winter 2010
Page 13
Sweet stuffed
Scleroderma Centers of Excellence
America’s sweet tooth is growing. Like many other mammals, we are hooked on sugar because it is packed with energy and our bodies have
evolved ways of wanting us to consume more of it.
The following list of Scleroderma Centers of Excellence was compiled with the assistance of the Scleroderma
Foundation’s Medical Advisory Board to provide patients with knowledgeable resources for diagnosis, care,
and research.
Foods are sweetened with various sugars: sucrose, fructose, honey, corn syrup and more. Sugars from any source contain 4 calories per gram. In
other words, equal amounts of different sugars provide the same amount of energy to the body. However, some sugars taste sweeter than others,
so you don’t need to add as much to get the same level of sweetness.
!"#$%&'$%()*+&,-')./&-
Alabama-University of Alabama at Birmingham — Rheumatology Clinic, 2000 6th Avenue, Birmingham, AL
35249. Barri J. Fessler., M.D.(205)-934-2813
Here’s a primer on common sweeteners, as well as some not-so-common ones.
Arizona-Mayo Clinic Arizona, 13400 E. Shea Blvd., Scottsdale, AZ 85259. W. Leroy Griffing, M.D. (480)-301-4342
Sucrose
California-University of California, Division of Rheumatology,1000 Veteran Avenue, Rehab Center Room 32-59,
Box 951670, Los Angeles, CA 90095-1670. Dinesh Khanna, M.D., M.S., Philip Clements, M.D., M.P.H. Daniel
Furst, M.D. (310)-206-4112
Table sugar, or sucrose, is the stuff we use in cubes or by the spoonful, and know its flavor so well that it’s what we compare other sweet flavors
to. Most commercial sucrose comes from sugar beets and sugar cane. The natural sugar content of the plants is refined to produce granulated,
powdered, brown and specialty sugars. Molasses, a byproduct of the refining process, flavors and moistens darker sugars.
Glucose
When glucose is added to foods, it appears on nutrition labels as glucose, corn sugar or dextrose. Even if it isn’t added to foods, we end up with
a lot of it. Simple sugars are converted to glucose by the liver, while more complex carbohydrates are digested down to glucose in the gut before
being absorbed into the bloodstream.
Connecticut-University of Connecticut Health Center, Division of Rheumatic Diseases/University Physicians,
Marb Building, 263 Farmington Avenue, 3rd Floor, Farmington, CT 06030. Naomi Rothfield, M.D., Santhanam
Lakshminarayanan, M.D. (860)-679-2160
District of Columbia-Georgetown University, PHC Building, Dept. of Rheumatology, 3800 Reservoir Road, 6th
Floor, Washington, DC 20007. Virginia Steen, M.D.(202) 444-6200
Once digested, glucose supplies the energy most parts of the body need to work. The amount of glucose in the bloodstream, the blood sugar
level, affects athletic performance, brain function, appetite and emotions. Because it’s so critical to the body, levels of available glucose are tightly
regulated by hormones such as insulin; and errors in this system can lead to disorders such as diabetes.
Illinois-Northwestern Scleroderma Program, Northwestern Medical Faculty Foundation at Northwestern
Memorial Hospital, 675 North St. Clair, Suite 14-100, Chicago, Illinois 60611. John Varga, M.D., Monique E.
Hinchcliff, M.D. (312)-503-1137
Fructose
Maryland-Johns Hopkins University School of Medicine, Johns Hopkins Scleroderma Center, 5501 Hopkins
Bayview Circle, Baltimore, MD 21224.Fredrick Wigley, M.D., Laura Hummers, M.D.,Francesco Boin, M.D.
(410)-550-7715
Fructose is often called fruit sugar, which is not quite the story. Although fruit and fruit juice contain fructose, they also contain glucose and sucrose.
And these days, the main source of dietary fructose is not fruit, but added sweeteners.
Fructose may have slightly different metabolic effects on the body. UC Davis researchers have found that people who drank fructose-sweetened
beverages had increased levels of blood triglycerides and LDL, or “bad” cholesterol, compared with those who drank similar amounts of a glucosesweetened beverage. They also had lowered insulin sensitivity, meaning they required more insulin to regulate their blood sugar levels. Researchers
have also noticed larger effects of fructose on men than women.
Corn syrup and high fructose corn syrup
Starch in corn can be broken down into glucose-rich corn syrup. Manufacturers favor this sweetener since it keeps food moist and is cheap and
abundant. Much of the glucose in corn syrup is chemically converted to the comparatively sweeter-tasting fructose, and the resulting high fructose
corn syrup packs a sweeter punch than regular corn syrup.
Massachusetts-Boston University Scleroderma Program, Doctor’s Office Building, Boston University Medical
Center, 720 Harrison Avenue, Boston, MA 02118. Robert Simms, M.D., Robert Lafyatis, M.D., Peter Merkel,
M.D.(617)-638-4312
Michigan-University of Michigan, Scleroderma Program, 1500 E. Medical Center Drive, Taubman Center,
Third Floor, Ann Arbor, MI 48109. James R. Seibold, M.D.,Elena Schiopu, M.D.,Kristine Phillips, M.D., Ph.D.
(734)-647-5900
Minnesota-Fairview University Medical Center Scleroderma Clinic, 420 Delaware SE, 6th Floor Medicine, Phillip
Wagensteen Building, Minneapolis, Minnesota 55445. Jerry Molitor, M.D. (612)-625-8690
Researchers have noticed that the introduction of high fructose corn syrup to a wide variety of foods and beverages around 1970 coincided with a
rise in obesity levels in the United States, but recent evidence suggests there is little metabolic difference between fructose and sucrose, and that
the obesity crisis is a problem of excessive consumption of calories from all kinds of sweeteners.
New Jersey-University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Scleroderma Program,
125 Patterson St., 5th floor, Clinical Academic Building, UMDNJ-RWJ, New Brunswick, NJ 08903. Vivien M. Hsu,
M.D.(732)-235-7217
Lactose
New York-The Center for Rheumatology, Scleroderma Clinic, 1367 Washington Avenue, Suite 101, Albany, New
York 12206. Lee Shapiro, M.D.(518)-489-4471.
This is the sugar found in milk products. Babies can all digest lactose, but by adulthood a significant percentage of people have lost the ability
to make the digestive enzyme that breaks down lactose into its constituent parts. Excess undigested lactose is passed to the colon, where it can
prevent the normal uptake of water and provide fuel for gas-producing bacteria. Together, these factors cause the intestinal distress characteristic
of lactose intolerance.
Stony Brook University Hospital, Risk Reduction and Disease Management Center, 26 Research Way, East
Setauket, NY 11733. Heidi J. Roppelt, M.D. (631)-444-0580
Honey
North Carolina-Duke Scleroderma Research Center Clinic, Duke Clinic 2F, Durham, NC 27710. E. William St.
Clair, M.D., Keith M. Sullivan, M.D.(919)-668-4383
For much of human history, honey was the most abundant source of relatively pure sugar. This bee-made sweetener is a mixture of fructose,
sucrose and glucose and water.
Pennsylvania-Thomas Jefferson University Hospital, Division of Dermatology — Scleroderma Center, 211 South
9th Street, Suite 600 Walnut Towers Building, Philadelphia, PA 19107 Sergio Jimenez, M.D. (215)-955-5170
Some research shows that honey contains more antioxidants and other potentially beneficial compounds than refined sucrose. One study showed
that using honey instead of white sugar could add the same amount of antioxidants found in a serving of nuts or purple fruits.
University of Pittsburgh, Arthritis and Autoimmunity Center, Falk Medical Building, Suite 2B, 3601 Fifth Avenue,
Pittsburgh, PA 15213. Thomas A. Medsger, Jr., M.D.(412)-647-6700
Agave syrup
South Carolina-Medical University of South Carolina, 135 Rutledge Avenue, 5th Floor, Charleston, SC 29425.
Richard M. Silver, M.D., Edwin A. Smith, M.D. (843)-792-9200
This sweetener, made from the same plant as tequila, has become popular in recent years because of its purported mellow flavor.
Agave necter has copious amounts of sugar, up to 90% fructose (the rest is glucose). This high level of fructose keeps it from spiking blood sugar
the way sucrose or pure glucose do. Hence they are referred to as having a low glycemic index, the measure of glucose in the blood two hours
after consumption.
The facts of the matter
Research on sweeteners has a long way to go before nutritional scientists will be able to say for certain whether some are less healthful than
others. There’s debate, too, over whether the body is more apt to put on weight when sugars are slurped down in soft drinks than when consumed
in solid foods.
Tennessee-UT Medical Group, Rheumatology, 1325 Eastmoreland, Suite 365, Memphis, TN 38104 and 7945
Wolf River Blvd, Suite 120, Germantown, TN. Benjamin Wang, M.D.(901)-448-7260
Southern California Chapter
11704 Wilshire Blvd., Suite 250
Los Angeles, CA 90025
(877) 443-5755 -Toll free
(310) 477-8225 -Office
(310) 477-8774 -Fax
(877) 443-5755 -Espanol
email: sclerodermasocal@hotmail.com
website: www.sclerodermasocal.org
We are a Chapter of the
Scleroderma Foundation of Danvers, Mass.
Dues are $25 for an annual membership
and should be mailed
to the Los Angeles address.
01$",./2$*3/%$".&%4 Brian Ross Adams
5%$6/'$-.*&7*.8$*9&)%'4 Daniel Furst, MD
The ScleroSun
The Sclero-Sun is a publication
of the Scleroderma Foundation/
Southern California Chapter.
0'/.&%4 Robert Rich
Phone: (877) 443-5755 or (818) 991-7342
bobndi@sbcglobal.net
Article ideas are very welcome.
Please call, email, or mail to:
ScleroSun
6649 Maplegrove St.
Oak Park, CA 91377
0()/#*3/%$".&%:
The Chapter office maintains an email directory of all our
members to facilitate important communications. If you
haven’t given us your email address, please send to:
6"#$%&'$%()6&")#;8&.()/#<"&(
3/6"#)/($%
The Scleroderma Foundation and the Southern California Chapter do not
endorse any drugs or treatments reported here. Information is provided
to keep readers informed. Because the manifestations and severity of
scleroderma vary among individuals, personalized medical management is
essential. Therefore, it is strongly recommended that all drugs and treatments
be discussed with the reader’s physician(s).
Texas-University of Texas Professional Building/ Rheumatology Clinic, 6410 Fannin, Suite 600, Houston, TX
77030. John Reveille, M.D., Maureen Mayes, M.D., MPH. (832)-325-7191
Washington-Virgina Mason Medical Center, 6th floor of Lindeman Building, 1100 9th Avenue, Seattle, WA 98101.
Jane Buckner, M.D., Jeff Carlin, M.D.(206)-223-6824
For now, there’s agreement on one thing — we’re eating too much sugar, regardless of which kind we’re talking about.
Sweet food for thought.
Some have been thought brave because they were
afraid to run away. — Thomas Fuller
Page 14
When written in Chinese, the word crisis is composed
of two characters. One represents danger, and the other
represents opportunity. — John F. Kennedy
Winter 2010 The ScleroSun
The ScleroSun Winter 2010
Page 15
Scleroderma Foundation
Southern California Chapter Calendar
!""#$%&'()%*+#,)+(#-%.#',,#'//."++"+
#'*/#&%*('&(#)*-%.0'()%*
Visalia
Contact Lety
Antelope Valley
Contact Carole
Crescenta Valley
Contact Joan
South Bay
Contact Valerie
January 10 (Sunday)
San Fernando Valley
11:00 AM to 1:00 P.M.
January 16
Ventura County
11:00 AM to 1:00 P.M.
1733 San Vito Lane
One time only
Camarillo, CA 93012
January 23
Whittier/San Gabriel Valley
10:00 AM to 11:30 AM
February 14 (Sunday)
San Fernando Valley
11:00 AM to 1:00 PM
February 27
Orange County
11:00 AM to 1:00 PM
Antelope Valley
Contact Carole (661) 273-6952
Crescenta Valley
Contact Joan (626) 824-0921
jonettec@hotmail.com
Orange County
Fountain Valley Hospital
Saltzer Conference Room
11170 Warner Ave.
Fountain Valley 92708
Contact Bonnie D. (714) 839-7034
bjdsclero@aol.com
San Fernando Valley
Sherman Oaks Hospital
Doctors Conference Room
4929 Van Nuys Blvd.
Sherman Oaks 91403
Contact Kelly (818) 974-2428
Kelly@kellycryan.com
South Bay
Oral and Maxillofacial Surgery Office
1812 Artesia Blvd.
Redondo Beach 90278
directions at
http://omsurgery.com/office1.html
Contact Valerie (310) 390-1717 (home)
(310) 318-5970
(weekdays except Weds.)
DALEVAL@aol.com
Spanish Speakers Club
Se Habla Español
Chapter Office
11704 Wilshire Blvd. Ste 250
Los Angeles 90025
Contact Josephine
Oficina Esclerodermia (877) 443-5755
Ventura County
Camarillo Health Care District
3639 East Las Posas Rd. Ste 117
Camarillo 93010
Contact Arline (805) 987-8236
TheWetters@msn.com
Or Bob (818) 469-5456
bobndi@sbcglobal.net
Visalia
Contact Lety (559) 734-1011
Westside
Chapter Office
11704 Wilshire Blvd. Ste 250
Los Angeles 90025
Contact Josephine (310) 477-8225
(877) 443-5755
sclerodatasocal@hotmail.com
Whittier/ San Gabriel Valley
Whittier Presbyterian
Intercommunity Hospital
12401 E. Washington Blvd.
Whittier 90602
Contact Norma (626) 369-2096
normachew@roadrunner.com
Myrna (562) 699-5080
Additional Events:
March 14, 2010
Spring Education Day
Kaiser Permanente Med. Center
5601 DeSoto Ave. 9:00 AM to 3:00 PM
Woodland Hills, CA 91367
Our attitude toward life determines life’s attitude
towards us. — Earl Nightingale
Winter 2010 The ScleroSun