Wednesday 19 November 2014

Answering TTP Foundation Pilots an Exciting New Program!

On Tuesday, October 28th, 2014, I accompanied Sydney Kodatsky, Executive Director, on a road trip to London, ON, to take part in the Foundation’s first Volunteer Patient Speakers Bureau presentation to medical students. This new and exciting program brings TTP patients into the classrooms of medical students to help bring awareness and a voice to TTP.

Stakeholders have been asking for this program since the Foundation’s inception. I received directive from the Board of Directors to develop the program in 2014. I was fortunate to have support from Dr. William Clark, Professor of Medicine and recipient of an Answering TTP Foundation research grant, who invited us into his classroom to pilot the program.

Now we had a place, next we needed a speaker. I knew that I needed someone who was experienced, and who was comfortable telling their personal story to strangers. Also, I needed someone who could provide me with feedback in order to develop a training document for future patient volunteer speakers. I knew just who to ask, the Founder of the Answering TTP Foundation, Sydney Kodatsky, who is no stranger to sharing her personal TTP experience in front of public audiences. I knew that Sydney would need limited preparation help and that she would be able to offer me valuable feedback in regards to how a patient can prepare. Feedback that will further the development of this program so that we can roll out to other patient volunteers internationally!

Sydney happily agreed and the pilot of the program was in full motion.

We arrived at London Health Sciences Centre about 30 minutes early so that we could get our bearings and find the conference room where the presentation would be held. This also gave Sydney time to go over her prepared speech before speaking to the students.

At just after 3pm, Dr. Clark and his students, renal fellows, invited us into the cozy conference room. As Sydney spoke, I watched as each of the students took notes and seemed captured by Sydney telling her personal experience with TTP. When she finished, Dr. Clark and his students asked questions about everything from treatment she received, to how she felt when diagnosed, to what had been the scariest part of her experience.

After the presentation Sydney and I were energized about the impact that these types of presentations can have.

Me: “How do you feel that went?”

Sydney: “I feel like it went great. As a patient, I feel like I was able to bring TTP out of a textbook and give it a face. I feel that moving forward in their careers, TTP will be a diagnosis consideration when a patient presents to them, which means a patient may be diagnosed sooner because I took some time out of my day to share my story with these medical students.”

Me: “How did you feel your story was received by the students?”

Sydney: “They seemed genuinely interested when I was speaking and they asked thoughtful questions that I had no trouble answering. It was great that the Dr. Clark moderated this Q&A to ensure that he handled the more technical questions and I answered from the patient perspective. Any patient would be able to answer their questions.”

Me: “What are the 3 most important points you hope they took away from your story?”

Sydney: “1) To consider the diagnosis of TTP when appropriate; it is still too common that patients are diagnosed too late. 2) To understand a little bit of what it is like to receive such a rare and scary diagnosis, so that they can more effectively treat their patients. 3) To do what they can as doctors to support patient groups which play an important role to support patients, educate all stakeholders and fund research.“

I would like to thank Sydney again for accompanying me on this pilot. I am very excited about this program and look forward to engaging the TTP patient community to get involved, by sharing their stories in local classrooms. This program is still in the development stages, but the Foundation hopes to roll it out internationally in the near future!

Looking to get involved with the Foundation?

Why not start by sharing your story officially with us HERE online. Every story shared is unique and helps to generate more awareness for TTP!

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