TTP 27K Coastal Trek: Raising Funds For TTP!

On the 22nd July 2023, 4 days after the birth of my son, Arlo, I was blue lighted to the QE Hospital in Birmingham. I was advised I was in critical condition and subsequently diagnosed with an ultra rare blood disorder called TTP (Thrombotic Thrombocytopenia Purpura)

Without treatment, acute TTP has a mortality rate of 90%. The cornerstone of treatment is plasma exchange. Plasma exchange for thrombotic thrombocytopenic purpura (TTP) is a treatment that involves removing the patient’s plasma, which contains harmful antibodies, and replacing it with healthy donor plasma.

I received 27 large bags of plasma and without it, I would not be alive today. I am forever grateful to the medical team at the QE hospital and the donors.

TTP is a lifelong disease. TTP relapses are common and happen in 30-50% of patients. In the space of 4 days, I went from being a young, healthy 33 year old to a new, first time Mum with a rare lifelong health condition that requires constant monitoring to prevent me from dying prematurely. As a result, I found myself feeling very lost and confused by my diagnosis; particularly given its rarity.

During my hospital admission, I was told about the TTP Network. They provide support and advocacy to patients diagnosed with TTP, and also their families. The charity has been a guiding light for me and my family since my diagnosis. They have helped me connect with other TTP patients, advocated for me to ensure I receive the very best care and been a listening ear in a potentially lonely world as a rare disease patient. I want to give back a fraction of what they have given me.

So, on the 22nd July, the anniversary of my diagnosis, I am reclaiming the date of my brush with death and raising money to show that survivors of rare disease can thrive. Myself and a group of friends and family will be walking 16 miles along the Wales Coastal Path (Trearddur bay to Rhosneigr) The 16 miles translates to 27 kilometres which symbolises the amounts of bags of plasma I generously received to give me a second chance at life.

Fundraising for rare diseases poses a challenge due to the lack of public awareness and the small number of individuals affected, which often results in limited interest from potential donors. However, it’s crucial because it supports research and treatment development that can significantly improve the quality of life for those affected by these often overlooked conditions.

Your donations are so greatly appreciated and will contribute towards supporting other TTP patients as they navigate living with a rare disease and raising critical funds for clinical research as we aim to find better treatment, and ultimately a cure for this difficult disorder.