Friday 22 July 2011

A Call for Patient Stories to Help Raise Awareness for Thrombotic Thrombocytopenic Purpura, TTP

When TTP strikes it is considered a true medical emergency. Early diagnosis is the key to saving lives and reducing the potential for irreversible, life-altering complications. But diagnosis can be delayed because awareness for TTP is low. TTP symptoms can look like a multitude of other more common and less dangerous conditions. Both patients and doctors can be fooled. As a patient organization, Answering TTP Foundation has come to know of too many patients that are diagnosed too late. We’ve met families who have lost, and families who continue to struggle with irreversible complications.
One of the best ways to raise awareness for TTP is for TTP patients and supporters to share their experiences. Personal stories are interesting to the public. Facts are boring. We need you to share your experience to help raise awareness for TTP. Please share your TTP experience with us today!
Sharing such a devastating and scary time can seem like a daunting task. Where do you begin? I think the first half-page draft of my experience with TTP was one of the hardest things I’ve ever written. It took me forever! I knew the value of sharing my experience, but I was worried that people would feel sorry for me, or that they would think I was complaining. In reality, people have been genuinely interested in learning about TTP, and once they hear my story they want to help improve the prognosis for all TTP patients.
If you are a fellow TTP patient or supporter I encourage you to pick up a pen and just start writing, or these days turn on your computer and get typingJ Try not to judge your words at the outset. Get the facts and main points you want to cover down on the page. Then start to fill in the details. Don’t be afraid to walk away for a day and come back to it. Have someone read it over for you. For ideas visit and read through other patient stories. We have also compiled some tips to help you. Click here for detailed story submission instructions.

Prior to diagnosis I’d never heard of this three letter acronym before. Many TTP patients attribute their lives to chance - pure luck that they ended up at a medical facility that could recognize the symptoms of TTP quickly. I credit my mom for pursuing a second opinion after I was diagnosed with a migraine at a major city-centre emergency room.
Sharing your story could save a life.

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