Your support can mean so much to your loved one living with TTP

Care partners play an important role

An episode of thrombotic thrombocytopenic purpura (TTP) is a medical emergency. Because of this, a person having an episode may need the support of a care partner, like a significant other, family member, or friend.

Is your loved one in the hospital with TTP?

What to know now

Care partners play an important role

An episode of thrombotic thrombocytopenic purpura (TTP) is a medical emergency. Because of this, a person having an episode may need the support of a care partner, like a significant other, family member, or friend.

Photo, Claudia, mother and caregiver

“I had to be the pillar for my family…I sat by her bedside every day doing research, reading up on the illness, trying to figure out what were the next steps.”

—Claudia, mother and caregiver

Watch Claudia’s story

Since TTP is so rare, it can be hard to know how to help your loved one. Here’s how you can get started:

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Learn about TTP

A TTP diagnosis can be confusing for both patients and care partners. Getting educated about TTP and how it affects the body is the first step to supporting your loved one.

See what is happening in the body
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Help with TTP management

You may help keep track of medication, appointments, and more.

Find out about the goals of treatment
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Watch for signs of a recurrence

TTP can be a lifelong condition. Know the symptoms and triggers of TTP so you can help your loved one seek treatment as soon as possible.

See the symptoms of TTP
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Provide emotional support

People recovering from a TTP episode often feel anxious and stressed. You can be there for your loved one to comfort them emotionally.

Connect with others in the TTP community
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Taking care of yourself is important too

Care partners sometimes minimize their own needs while focusing on their loved ones. Taking time to keep your mind and body healthy can help you to be there for your loved one.

Ways to reenergize and reset:

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Eating a healthy diet

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Getting enough sleep and exercise

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Connecting with friends and family

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Taking time to do things you enjoy

Part of caring for someone with TTP is advocating for them when they cannot do it themselves. Sometimes it involves coaching them to be their own advocate when they are ready and able.

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Talking about TTP

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With the care team

There may be times when your loved one doesn’t feel well enough to speak with the healthcare providers. If this is the case, you can talk with the doctors and ask any questions. You can talk with them about medical history, treatment options, and more. This information will allow them to better care for your loved one.

Things to tell the care team:

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Medical history you are aware of, including:

  • Medications they take
  • Other medical conditions they have
  • Family history of medical conditions
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Symptoms your loved one experienced. Share anything that you noticed or that your loved one told you about

See the symptoms of TTP
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Questions you may want to ask:

  • Are there any resources to help me learn more about TTP?
  • Can you help me understand the treatment plan?
  • Are there signs I can look for in case this happens again?
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With your loved one with TTP

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.

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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?
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With your friends and family

Getting support from your loved ones can be comforting when you are caring for someone with TTP. 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:

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Explain when and how you will provide updates. Letting friends and family know how you’ll share updates will help limit the questions they may have

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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 okay to be clear and direct about what would really help you as your needs change

Photo, Claudia, mother and caregiver

“…if the people around us could just have patience and understand that we’re learning this as they’re learning it.”

—Claudia, mother and caregiver

Watch Claudia’s story

TTP is rare, but you’re not alone.
Learn from others who have been there.

Hear TTP stories

TTP can be managed, but it’s important to
watch out for episodes.

Know the signs