Sydney's Story
Three years ago Alec and I had never heard about Thrombotic Thrombocytopenic Purpura, TTP. But this dangerous blood disorder almost took my life. I was misdiagnosed with a migraine at a major city-centre hospital and sent home.
We are extremely lucky that I received a 2nd opinion and subsequent life-saving treatment. Others have not been so lucky. Delayed treatment can result in irreversible brain, heart and kidney damage. Without treatment 95% of patients die. TTP can take lives. TTP can forever alter lives. Too many families have lost. And too many families continue to struggle with irreversible complications.
Please support Alec and I in our quest to help Answer TTP! Donations over $10 will receive a tax receipt.
We will be joining other TTP patients and supporters on September 24, 2011 to raise awareness for this orphaned disorder. Participants will be walking alone or in small groups wearing common distinct T-shirts.
Pledges will help us to raise funds for much needed research to help ease treatment and ultimately find a cure for TTP. TTP is too rare to make it economical for pharmaceutical companies to fund specialized TTP research. Your donation, no matter how small, makes the fight possible.
We are a geographically dispersed patient group. Walking alone or in small groups within our local communites not only gives us a sense of unification and strength, but wearing common distinct T-shirts will attract media attention which will raise awareness to help save lives.
Thrombotic Thrombocytopenic Purpura, TTP, is a rare blood disorder characterized by small blood clots that form throughout the body. A TTP crisis is considered a true medical emergency. Without treatment 95% of patients die. Although a TTP crisis is a medical emergency treatment is often delayed or absent due to limited awareness. Education will help speed early detection of a TTP crisis. Delayed diagnosis leads to irreversible complications from heart attack, stroke, kidney failure etc.
TTP treatment needs innovation. Treatment requires not only steroid medication used to counteract my body’s attempt to attack itself, but also Apheresis blood treatments. These blood treatments involve the replacement of my blood plasma with that of 10 donors during each 3 to 4 hour treatment. I have had over 47 Apheresis treatments over the past 2 years. This translates to about 500 gifts from blood donors.
About 60-70% of TTP patients will go through this treatment process once and never experience a relapse. For the others, like me, TTP continues to reoccur. Apheresis blood treatments are not a cure for relapsing TTP patients. But the treatment has provided me more time and therefore a chance to try a new experimental treatment aimed to extend remission time. In September 2010 I completed a round of this new treatment we have our fingers crossed for a long remission this time.
