By Sydney Kodatsky | Saturday, November 5, 2016 - 12:00am
Hello, thank you for having me participate today. I am sorry that I was unable to make the journey to be there in person. Unfortunately this was impossible due to my health. I have TTP and also Stage IV Melanoma as a result of my treatment. Let me start with a little about me…
In September of 2008 I got out of the pool after a swim, took off my goggles and suddenly couldn’t see anything in front of me. Everything was dark. I was 28 years-old, a new MBA graduate and recently married. I waited 5 hours in a major Toronto Emergency Room, only to be sent home with a migraine diagnosis. The next day the migraine was still there and my vision was fluctuating—but my family doctor’s office told me there was nothing to worry about. My mom knew something wasn’t right and sought a third opinion. Routine blood work revealed dangerous anomalies that resulted in an emergency referral to another hospital, and finally a diagnosis of Thrombotic Thrombocytopenic Purpura (TTP).
I was diagnosed with TTP only after my mom took life-saving action by seeking out a 3rd opinion. I was extremely lucky to not have experienced heart attack, stroke or kidney failure due the delay in diagnosis.
I have fought TTP 7 times so far. Usually a crisis is associated with about a 2 week hospital stay. Every time I’ve been scared. Scared that
- I might not survive this one.
- I may end up with a blood borne disease. I’ve had blood from over 700 donors for TTP plasmapheresis treatment. Technology is excellent at picking up known diseases, but what about emerging diseases.
- I’ll have a severe allergic reaction from the plasmapheresis blood exchange treatment. I passed out the last time I had a plasmapheresis treatment, I have had hives in the back of my throat, shakes, sweats and rashes over my body.
The statistics I’ve heard for TTP are devastating. With treatment up to 20 percent of idiopathic TTP patients do not survive. Of the surviving patients about 30% of patients relapse, some of those chronically year after year. For the 80% of patients who survive a TTP crisis, life isn’t the same afterward. Many patients battle long-term effects from stroke or kidney failure. Most patients I have spoken with describe memory and recall issues. Young women in their child bearing years worry about a relapse with pregnancy. Frequent TTP relapse patients loose sleep about the long term effect of multiple relapses and their treatment. What will their life look like in 15 years?
I have seen the improvement in TTP treatment especially over the last couple of years. Now the Plasmapheresis treatment is faster thanks to new equipment, and the replacement product is safer thanks to the availability of solvent detergent plasma in Canada, in part thanks to the Foundation’s advocacy work.
We still don’t have a targeted treatment for TTP. This means that in addition to Plasmaphersis which siphons off the bad stuff in my blood, we have to use medications that act on the whole immune system, not just the part misbehaving. Compromising your entire immune system to keep the TTP in check can have consequences. For me, that was Melanoma Cancer, stage IV.
We need more TTP research to find a targeted treatment and a cure for TTP. That is why I founded Answering TTP Foundation in 2010. Since that time, the Foundation has committed 1.5 Million Cdn dollars (or 1,004,460 euros) to TTP research through 2018. We have research grants in the US, the UK, Switzerland, and Canada. We accept proposals from around the world and choose the most deserving effective international research.
The Foundation has also fosters medical research collaboration to connect researchers and practitioners in order to promote the best standard of care for all those affected by TTP. Last year the Foundation held our first TTP Dinner Symposium alongside the ISTH conference in Toronto, and this year a journal article about the event was published.
In addition, the Foundation maintains a current website to act as a hub of support and educational resources for the TTP community. We created educational brochures for patients, including a new patient brochure, because when I was diagnosed all that was available to me were medical journal articles about TTP. We have translated this brochure into 8 other languages including German.
As you know life goes on with a TTP diagnosis, and I am determined to live it. My TTP fight has extended beyond hospital walls. I founded Answering TTP Foundation to raise money for TTP research, education and support.
Are you ready to join in?
To support research, education and support the Foundation runs fundraising events including an annual international walk for everyone to take part in, the third weekend of each September. Participants walk and raise funds in their own communities around the world. Please consider walking on September 16, 2017 with us!
We may be a recognized Canadian charity, but our TTP community is only 35% Canadian. The rest are from around the world. If you are not already a member, and it is free, please register on our website at AnsweringTTP.org to receive our newsletter, updates and surveys.
Thank you for this opportunity to share some information about our international patient organization.