Understanding Glanzmann`s Thrombasthenia

Understanding Glanzmann’s Thrombasthenia
LUIS
Luis has Glanzmann’s thrombasthenia
What is Glanzmann’s
thrombasthenia?
To fully understand Glanzmann’s thrombasthenia
(GT), you must first understand how the clotting
process works. There are proteins on the platelets
in blood that help your blood clot properly. One
of these proteins is called glycoprotein. One
glycoprotein called 2B-3A helps platelets connect to
each other by binding to fibrinogen strands, forming
bridges between platelets. By doing so, the platelets
stick together to form a “plug” that stops a bleed.
Someone with GT has specific defective glycoprotein.
This means the platelets cannot form a plug to stop
a bleed.
How did I get GT?
GT is a rare genetic disorder that affects about 1 in
1 million people. It is inherited from both parents
and can occur in both men and women.
What are the signs and symptoms of GT?
Most common signs and symptoms
Easy bruising
Bleeding from the nose or gums
In women, heavy menstruation
Other signs and symptoms
Swelling, pain, or warmth around a joint
Inability to straighten or bend a joint normally
Headache or neck ache
Drowsiness or loss of consciousness
Sensitivity to light
Upset stomach
Vomit that is black and syrupy or bright red
Red- or black-colored stool
Remember to keep others informed
In cases of emergency, remember that GT is rare, so
it may not be on the forefront of every health care
professional’s mind.
• Be sure to wear your medical bracelet
• Keep health care professionals and family members
informed about your condition
• Work with your hemophilia treatment center (HTC)
to educate your school (eg, nurse, coaches, teachers)
MARIA, JASMINE, AND JIMENA
Jasmine and Jimena have Glanzmann’s thrombasthenia
Tips for staying healthy
• Manage anemia. Iron deficiency can occur with
even the smallest of bleeds. If you are losing as little
as 5 milliliters (about 1 teaspoon) of blood per day,
you are also losing 2.5 milligrams of iron in your
blood and you may become anemic. It is important
that you manage your bleeds and tell your health
care professional how frequently you are bleeding
• Follow medical orders. Be sure to follow any
maintenance or preventive measures your health
care professional has planned for you. GT can be
a severe condition, but with the right care and
support it can be properly managed
• Follow healthy steps. To help prevent further
health problems:
– Maintain good dental hygiene
– Maintain healthy blood iron levels
– Avoid anti-inflammatory drugs (eg, aspirin,
ibuprofen, naproxen) that affect platelets, unless
your health care professional directs you to use them
– Discuss your sports-related limitations with your
doctor and consider avoiding contact sports
– Women: Discuss with your health care professional
whether hormone therapy may help manage heavy
menstrual bleeding
– Women: Discuss ways to prevent bleeding during
and after pregnancy/childbirth with your health
care professional
Share your GT experience
Because it is rare, GT often goes undiagnosed. And,
unlike other rare bleeding disorders, there is not a
lot of information available to help people with GT
understand their condition. Once you have a greater
understanding and gain experience, you have an
opportunity to become an advocate for yourself
and others.
If you know family members, friends, or families
with GT in your community who are having similar
bleeding issues, it is important that you share what
you know with them as well as your local HTC. Doing
so may help build a stronger GT community.
Quick tips
Work with your health care professional
to manage your iron levels and avoid anemia
Keep healthy
GT is rare, so wear your medical bracelet
in case of emergency
Help others with GT by telling them what you know
Keep in contact with your HTC
Treatment options
Treatment can depend on what type of bleed you
may have.
For smaller injuries, gum bleeding, or nosebleeds,
your health care professional may suggest you use
pressure, nasal packing, or blood-related products
to get your bleeding under control.
For more serious bleeds and/or surgery and dental
or other procedures, your health care professional
may prescribe platelet transfusions or drugs that help
the blood-clotting process.
With every bleed, it is important to call your HTC and
begin first aid (eg, compression, elevation) as soon
as possible.
Remember, GT is a serious condition and bleeding can
be unpredictable. A health care professional should
always be consulted before treatment begins.
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