Your support makes a difference for your loved one with acquired thrombotic thrombocytopenic purpura (aTTP/iTTP*)

Experiencing an episode of aTTP/iTTP and being treated for the condition can be overwhelming and scary. Because of this, someone with aTTP/iTTP may need the support of a care partner, such as a significant other, family member, or friend.

Is your loved one in the hospital with aTTP/iTTP?

What to know now >

Because aTTP/iTTP is so rare, it can be hard to know how to help. Here are some ways you can get started:

Learn about aTTP/iTTP
aTTP/iTTP can be confusing. Learning what happens in the body with aTTP/iTTP is the first step to supporting your loved one.


See what is happening in the body >

Help with aTTP/iTTP management
Your loved one may need or want help keeping track of their CABLIVI schedule, appointments, and more.



Find out how to make the most of treatment >

Be aware of signs of an aTTP/iTTP episode
aTTP/iTTP can be a lifelong condition. If you know the symptoms and triggers of aTTP/iTTP, you can help your loved one get treatment as soon as possible.


Learn what to watch for >

Provide emotional support
People with aTTP/iTTP can often feel anxious and stressed. Comforting them emotionally can help them through their recovery.



Connect with others in the aTTP/iTTP community >

You may need to speak up for your loved one if they cannot do it themselves. Sometimes that means coaching them to be their own advocate when they are ready and able

Talking about aTTP/iTTP

    There may be times when your loved one doesn’t feel well enough to speak with the care team. If this happens, you can talk with the doctors on your loved one’s behalf with their permission, or if you are designated as a surrogate. In those situations, you can talk with the team about your loved one’s medical history, treatment options, and more. This will allow them to better care for your loved one.

    Things to tell the care team:

    • Medical history you are aware of, including:
      • Medications they take
      • Other medical conditions they have
      • Family history of medical conditions
    • Symptoms your loved one experienced
      • Share anything you noticed or your loved one told you about, for example, headaches, feeling tired, or chest pain

    When your loved one is feeling up to it, ask how you can help them manage their condition and treatment. The more you know about what they want and need, the better you can support them.

    Questions you may want to ask:

    • How can I best support you in the hospital and at home?
    • Are you comfortable with me speaking with your care team on your behalf if you are unable?
    • If so, is there anything I should know to make sure you are getting the best care?

    Getting support from your loved ones can be comforting when you are caring for someone with aTTP/iTTP. It can also be overwhelming at times. Talk to your loved ones about the best ways to help and communicate.

    Tips for keeping up with your support network:

    • Explain when and how you will provide updates
      • Letting family and friends know how you’ll share updates will help limit the questions they may have
    • Ask for what you need
      • Your support network will want to help but may not know what you really need
      • At times, you may need help with managing appointments or making meals. At others, you may just need someone to listen
      • It’s OK to be clear and direct about what would really help you as your needs change

Your loved one’s care is important, but taking care of yourself is important too

Care partners sometimes focus so much on their loved ones that they forget their own needs. Taking time to keep yourself healthy can help you be there for your loved one.

Ways to recuperate:

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Get enough sleep and exercise

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Eat a healthy diet

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Connect with friends and family

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Take time to do things you enjoy

Resources are available about CABLIVI, including how to take it at home and what to discuss with doctors

 

Videos about CABLIVI—from people’s stories to how to take therapy at home—are available to you


 

*aTTP is also known as iTTP. You and your healthcare team can use either term.
aTTP/iTTP=acquired/immune-mediated thrombotic thrombocytopenic purpura.

IMPORTANT SAFETY INFORMATION AND INDICATIONS