Patients and Supporters are encouraged to share your stories with the Answering TTP community. We will publish your submissions online and/or in our newsletters to help others facing similar challenges and raise awareness about TTP. You will be helping those people who have recently been diagnosed, understand not only the impact of these diseases on their and their families’ lives, but more importantly, show them how you have learned to live with TTP.
Caplacizumab is the first targeted treatment approved in Canada for aTTP. Have you had access to this treatment? If so, please consider including some detail in your story.
We want to hear from you now! Please submit your story and an image of you (only) using our online form here.
Feel unsure about what to write, perhaps the following points/questions will help guide your thoughts. Your story is important. Your story is interesting. So share it.
Some guidelines to help to start telling your story:
- Name and age and where you live.
- Are you married or do you live alone?
- Do you have a career?
- Are you a supporter for a loved one with TTP?
- What is/was your occupation and do you still work?
- How did you feel when you first felt unwell?
- Did you seek medical attention immediately, or did you think how you were feeling was related to age, busy lifestyle, etc?
- When you were diagnosed with TTP, how did you feel both physically and emotionally?
- What age were you when diagnosed with TTP?
- Had you heard about TTP before being diagnosed?
- How did your family cope with the diagnosis?
- What treatments were offered to you and what support, if any, was offered to you and your family? Were you treated with caplacizumab?
- Are you satisfied with the medical assistance provided by your hematologist? What about follow up?
- Are you satisfied with the medical assistance provided by your GP? What about follow up?
- Following diagnosis, how did you learn about TTP?
- How have you lived with TTP and how has it affected your life and that of your family?
- How have you learned to manage TTP?
- Have you experienced one or more relapses?
- How has TTP affected the life you had planned for yourself and family?
- What are the restrictions on your daily life?
- How do you see your future?