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Your voice matters.

Partnering with your doctor for care you deserve.

Living with Glanzmann’s Thrombasthenia (GT) when
platelets don’t work or FVII deficiency
(FVIId) can be challenging—and not every doctor fully
understands your needs. These resources are
here to help you speak up, track your bleeds and bleeding
symptoms, and feel confident talking with
your care team.

Your voice matters.

Partnering with your doctor for care you deserve.

Living with Glanzmann’s Thrombasthenia (GT) when platelets don’t work or FVII deficiency (FVIId) can be challenging—and not every doctor fully understands your needs. These resources are here to help you speak up, track your bleeds and bleeding symptoms, and feel confident talking with
your care team.

Bleed Documentation

Conversation Guides

Shared Decision-Making

Navigating the ER

Community Support

How it helps

Self-advocacy is key to managing your bleeding disorder. Keeping track of bleeds—when they happen, how long they last, what they look like with photos and videos, and how they affect your life—can help your doctor see the full picture. 

Consider documenting the following:  

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Bleed type, frequency & duration

Helps your care team recognize bleed patterns or changes and determine if your current treatment plan is working as intended

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Any pain or swelling that may signal joint bleeds 

Early reporting to your doctor may help them identify potential joint issues and guide timely treatment adjustments

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Photos and videos can provide clarity about your bleeding 

Visual records help your care team track challenges and can assist you with shared decision-making conversations to discuss at-home access to treatment

Bringing this information to appointments helps guide more collaborative discussions about treatment options, including whether at-home access to NovoSeven® RT could be right for you. 

How it helps

Open conversations with your doctor can help clarify your treatment options and build confidence in advocating for your needs. Below are some examples of questions to ask.

Untreated or delayed bleeds in joints can lead to complications such as pain, swelling, or long-term joint damage.

It’s important that your doctor is aware of the frequency of your hospital and emergency visits. Bringing notes and documentation can help you have a more productive conversation.

Limited access to factor can delay treatment. Discussing plans and supply options with your care team can help you prepare ahead—so you always know where and how to get treatment quickly.

It’s important to work with your healthcare provider to confirm that each bleed is completely treated, which may help prevent chronic pain and long-term damage.

Each of these questions can become part of an important discussion with your care team — helping you and your doctor plan ahead and find the right treatment approach for your needs.

How it helps

Shared decision-making means you and your care team work together to find the best treatment plan for your needs. The more you share—your experiences, your concerns, and documentation—the more your doctor can tailor care that fits you.

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Document your experiences

Bring a record of your bleeds, any patterns you’ve noticed, and how they’ve affected your day-to-day life.

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Discover your options

Ask your care team to explain all available treatments, including whether NovoSeven® RT could be an option for managing bleeds at home.

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Discuss your goals

Talk openly about what matters most to you, like feeling confident you can manage bleeds quickly and safely.

How it helps

With rare bleeding disorders like GT when platelets don’t work or factor VII deficiency, you may also need to educate hospital staff about your bleeding disorder and treatment needs.  
 
Below are questions and talking points to help you advocate for yourself or loved ones.

Start by informing the hospital staff that you have a bleeding disorder. Explain that your treatment may differ from standard bleeding protocols. Share your treatment plan from your hematologist immediately and provide your doctor's contact information.

Keep these with you or on your phone:

  • A list of your prescribed treatments and dosages
  • Your hematologist’s name, phone, or HTC affiliation 
  • A medical ID bracelet noting your condition and treatment

Stay calm and ask them to contact your hematologist or treatment center. You can say: “I have a rare bleeding disorder and I require certain treatment. My hematologist can guide the team on the right protocol for managing my bleeds.” 

How it helps

Find community support with your local Rare Blood Community Liaison (RBCL)

Your RBCL can help you:

  • Practice how to start important conversations with your care team
  • Learn what questions to ask 
  • Provide you with educational resources and connect with others living with rare bleeding disorders like GT when platelets don’t work and FVIId

Reach out to your local RBCL to receive a self-advocacy shared decision making tool
designed for people living with GT when platelets don't work or FVIId!

Reach out to your local RBCL to receive a self-advocacy shared decision making tool
designed for people living with GT when platelets don't work or FVIId!

How it helps
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Important Safety Information

What is the most important information I should know about NovoSeven® RT?

NovoSeven® RT may cause serious side effects, including:

  • Serious blood clots that form in veins and arteries with the use of NovoSeven® RT have been reported
  • Your healthcare provider should discuss the risks and explain the signs and symptoms of blood clots to you. Some signs of a blood clot may include pain, swelling, warmth, redness, or a lump in your legs or arms, chest pain, shortness of breath, or sudden severe headache and/or loss of consciousness or function
  • Your healthcare provider should monitor you for blood clots during treatment with NovoSeven® RT
  • You should not use NovoSeven® RT if you have ever had allergic (hypersensitivity) reactions, including severe, whole body reactions (anaphylaxis) to NovoSeven® RT, any of its ingredients, or mice, hamsters, or cows. Signs of allergic reaction include shortness of breath, rash, itching (pruritus), redness of the skin (erythema), or fainting/dizziness

What is NovoSeven® RT?

NovoSeven® RT (coagulation Factor VIIa, recombinant) is an injectable medicine used for:

  • Treatment of bleeding and prevention of bleeding for surgeries and procedures in adults and children with hemophilia A or B with inhibitors, congenital Factor VII (FVII) deficiency, and Glanzmann’s thrombasthenia with a decreased or absent response to platelet transfusions
  • Treatment of bleeding and prevention of bleeding for surgeries and procedures in adults with acquired hemophilia

What should I tell my healthcare provider before using NovoSeven® RT?

  • Tell your healthcare provider if you have any of the following, as these may increase your risk of blood clots:
    • congenital hemophilia and are also receiving treatment with aPCCs (activated prothrombin complex concentrates)
    • are an older patient particularly with acquired hemophilia and receiving other agents to stop bleeding
    • history of heart or blood vessel diseases
  • Tell your healthcare provider and pharmacist about all the medicines you take, including all prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies

What are the possible side effects of NovoSeven® RT?

  • The most common and serious side effects are blood clots
  • Tell your healthcare provider about any side effects that bother you or do not go away, and seek medical help right away if you have signs of a blood clot or allergic reaction

Please click here for Prescribing Information