Fundraising is a great way to support our small charity. Every penny raised will go towards providing information and support for patients and their families after a TTP diagnosis. TTP is very rare and patients and their loved ones can feel isolated. Help TTPNetwork to reduce that isolation by providing accurate information, and opportunities for peer support.

Natalie was diagnosed with TTP (thrombotic thrombocytopenic purpura) in July 2024, a very recent diagnosis after several misdiagnoses, which included suggestion of mortality within 5 years. At diagnosis, Natalie was told that without treatment death was imminent within hours.

TTP is a life-threatening blood disorder, considered a medical emergency that causes issues in blood clotting. TTP affects 4-6 people per million and can be congenital (familial) or idiopathic (no reason for). There is no cure, and a relapse of TTP can be triggered by any infection at all. This can be an uncertain and worrying time, with fear of any infection leading to a relapse. Treatment for TTP includes chemotherapy via a port in a main vein, and plasma exchanges, which then causes further immune issues, leading to increased risk of infections. During Natalie’s diagnosis, it has also been discovered she has 2 rare genetic issues, which also impact on the functioning of blood clotting, so although I often say she is my one in a million, she really is rarer than this!

During treatment, Natalie received over 130 bags of plasma and was attached to a machine for hours at a time, (similar to a dialysis machine), which removed her blood, cleaned it and replaced with the clean blood and plasma. A reminder that if you can give blood, plasma, platelets etc please do so – you may well have helped to save her life, thank you 😊