Frequently Asked Questions

The primary test used to help confirm Glanzmann Thrombasthenia (GT) is a platelet aggregation test, also called platelet function testing. During this test, various chemicals called agonists are mixed with the patient’s platelets to assess how well they aggregate.

In patients with GT, platelets typically fail to aggregate in response to most agonists. However, they usually respond normally to ristocetin, which helps doctors distinguish GT from other platelet disorders.

Additional testing may include:

• Flow cytometry to evaluate platelet surface proteins such as GPIIb/IIIa
• Genetic testing to identify mutations linked to GT
• Bleeding history and family history review by a hematologist

Because GT is extremely rare, it is important to work with a hematologist familiar with platelet function disorders whenever possible.

Treatment varies significantly depending on the severity of symptoms, bleeding episodes, and whether a patient has developed antibodies to platelets.

For many patients, minor bleeds can often be managed with:

• Pressure and local bleeding control
• Antifibrinolytic medications such as tranexamic acid or aminocaproic acid
• Nasal sprays or topical treatments for nosebleeds
• Iron supplementation if chronic bleeding causes anemia

For more serious bleeding episodes or surgery, treatment options may include:

• Recombinant factor VIIa (NovoSeven)
• Platelet transfusions
• Antifibrinolytic medications

Platelet transfusions are often effective, but they should generally be used carefully and only when truly necessary due to the risk of developing antibodies (platelet refractoriness). If platelets are required, HLA-matched platelets may help reduce this risk.

NovoSeven has been successfully used in many GT patients, including some who have developed antibodies to platelets. Dosing and infusion timing vary by patient and should always be guided by an experienced physician.

Always discuss treatment decisions with your hematologist or bleeding disorder treatment center.

Currently, there is no widely available permanent cure for GT, but promising research is underway.

Researchers, including Dr. David Wilcox and his team, have developed experimental gene therapy approaches that have shown success in animal models and human GT cells. The long-term goal is to advance stem cell and gene therapies into human clinical trials to evaluate safety and effectiveness.

While these therapies remain experimental, advances in gene therapy continue to provide hope for the future of GT treatment.

Glanzmann Thrombasthenia is usually inherited in an autosomal recessive pattern. This means a child must inherit one affected gene from each parent to have GT.

Parents who carry one affected gene are called carriers and typically do not have symptoms. When both parents are carriers:

• There is a 25% chance a child will have GT
• A 50% chance the child will be a carrier
• A 25% chance the child will inherit neither affected gene

Genetic counseling can help families better understand inheritance and future family planning options.

Yes. Symptoms and bleeding severity can vary greatly, even between members of the same family.

Some patients may experience:

• Frequent nosebleeds
• Easy bruising
• Heavy menstrual bleeding
• Bleeding after dental work or surgery

Others may have more severe bleeding episodes requiring hospitalization or specialized treatment.

Because GT affects everyone differently, treatment plans should always be personalized.

Patients with GT should avoid medications that can interfere with platelet function unless specifically approved by their doctor.

Common medications to avoid may include:

• Aspirin
• Ibuprofen (Advil, Motrin)
• Naproxen (Aleve)
• Certain blood thinners

Always consult your hematologist or pharmacist before starting new medications, supplements, or herbal products.

Yes, but careful planning is extremely important.

Patients should inform all doctors and dentists about their GT diagnosis before any procedure, including routine dental work.

A hematologist may recommend:

• Preventive medications
• Antifibrinolytics
• NovoSeven
• Platelet support if absolutely necessary

Many procedures can be completed safely with proper preparation.

Because GT is extremely rare, many local physicians may have limited experience treating it.

Patients are often best supported through:

• Hemophilia Treatment Centers (HTCs)
• Specialized hematologists
• Rare bleeding disorder programs

The Glanzmann’s Research Foundation may also help connect families with experienced providers and community resources.

You are not alone. The GT community is small, but incredibly supportive.

You can contact the Glanzmann’s Research Foundation anytime at:
info@curegt.org

We also encourage patients and families to connect with the GT support community, where members share personal experiences, treatment tips, and emotional support with others who truly understand life with GT.

Many individuals with GT are able to have children, but pregnancy and childbirth can require specialized medical planning due to bleeding risks.

Every patient’s situation is different. It is important to:

• Work closely with a hematologist and high-risk OB/GYN
• Develop a bleeding management plan before delivery
• Discuss treatment options well in advance

Many women with GT have had successful pregnancies with proper medical care and monitoring.

For most children with GT, life can be very normal.

Children with GT still go to school, make friends, play sports, travel, and enjoy everyday life. The key is learning how to manage bleeding risks safely while still allowing them to be kids.

Parents often learn over time which activities are safest for their child. Many patients enjoy lower-impact activities such as:

• Swimming
• Tennis
• Walking
• Cycling
• Non-contact recreational sports

Contact sports such as football, hockey, boxing, and certain forms of soccer may carry a higher risk of bleeding and should be discussed with your doctor.

One of the most important things you can provide your child is confidence, support, and the ability to live as normally as possible while safely managing their condition.

Glanzmann Thrombasthenia is considered ultra-rare because it affects only a very small number of people worldwide. This rarity can make diagnosis more difficult and often limits awareness, research funding, and access to experienced specialists.

Organizations like the Glanzmann’s Research Foundation help increase awareness, education, research support, and patient connection worldwide.

Tattoos and piercings can carry increased bleeding risks for people with Glanzmann Thrombasthenia (GT). The level of risk can vary greatly depending on the individual, the severity of their condition, and the type or location of the procedure.

Some patients may experience prolonged bleeding, swelling, bruising, or healing complications after body art or piercings. Areas with higher blood flow, such as the tongue, lips, or certain cartilage piercings, may present additional risks.

Before getting a tattoo or piercing, patients should:

• Speak with their hematologist first
• Discuss whether preventive treatment may be needed
• Choose a clean, licensed, and reputable studio
• Avoid procedures during periods of active bleeding issues

Many individuals with GT have safely received tattoos or piercings with proper planning and medical guidance, but every case is different. Careful consideration and communication with your healthcare team are important before making a decision.