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.
“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
Since TTP is so rare, it can be hard to know how to help your loved one. Here’s how you can get started:
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.
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.
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:
Eating a healthy diet
Getting enough sleep and exercise
Connecting with friends and family
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.
Talking about TTP
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 that you noticed or that your loved one told you about
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?
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:
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?
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:
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
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
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: