Frequently Asked Questions

About TTP

  • TTP (thrombotic thrombocytopenic purpura) is a rare auto-immune blood disorder where small blood clots form in blood vessels, which can affect organs and reduce platelet levels.

  • TTP is considered an ultra rare disorder with approximately 4 cases per 1 million people per year. Healthcare providers may have limited experience with it.

  • There are two main types:

    • Acquired (immune-mediated) TTP (aTTP or iTTP)

    • Congenital (inherited) TTP (cTTP)

  • No. TTP is not contagious and cannot be passed from person to person.

Treatment

  • Treatment depends on the type of TTP and may include plasma exchange, medications such as corticosteroid, and other therapies prescribed by a specialist.

  • It is recommended that TTP patients be monitored on a regular basis. This monitoring may decrease, since most patients do not have a re-occurrence.

  • Yes. Approximately 30-40 percent of TTP patients have relapses.

  • It is a treatment that removes and replaces plasma in the blood.

  • ADAMTS13 testing helps doctors understand TTP activity and guide treatment decisions.

Family & Genetics

  • Congenital TTP is inherited. Immune-mediated TTP is usually not inherited.

  • Yes. Many people with TTP have children, but pregnancy requires specialized medical planning and monitoring.

About Us

  • This website is for people living with TTP, caregivers, families, and anyone seeking information and support.

  • No. The information is meant to support education and connection, not replace advice from healthcare professionals.

  • You can join the community, share your story, volunteer, support awareness efforts, or help spread information.

Symptoms & Diagnosis

  • Symptoms can vary but may include fatigue, bruising, headaches, confusion, fever, weakness, vision changes, or signs related to low platelets and blood clots.

  • Yes. A TTP patient will get various symptoms which may subside, but then comeback again. Generally, the symptoms will worsen unless treated.

  • Diagnosis usually involves blood tests, including platelet counts and red blood cell tests. TTP is confirmed when the ADAMTS13 enzyme activity is below 10 percent of normal.

  • TTP can become life-threatening without timely treatment, so recognizing symptoms and getting urgent medical care is important.

  • Seek urgent medical advice or emergency care.

Living With TTP

  • Yes. TTP patients may go on to live full lives. Ongoing medical follow-up and awareness are important.

  • Patients may benefit from pacing activities, rest, nutrition, and discussing symptoms with their healthcare team.

  • Yes. The stress of a rare disease, hospitalizations, and uncertainty can affect emotional well-being. Support is available.

  • Yes. Exercise recommendations vary depending on your health status. Discuss safe activities with your healthcare provider.

Canadian Patient Support

  • Patients can ask their healthcare team about referral to hematology specialists experienced with TTP and rare blood disorders.

  • Yes, peer support communities can help patients and families connect with others who understand the experience.

  • Your organization can provide peer connections, support networks, and community resources.

  • Use trusted sources such as patient organizations, rare disease organizations, and healthcare providers.