Wednesday 26 November 2014

Volunteering for the Volunteer Patient Speakers Bureau

"On Oct 8th, 2014, Taryn, the Charitable Programs Director of Answering TTP Foundation, approached me about an opportunity to speak with a class of medical students regarding my experience with TTP at St. Joseph’s hospital in London, Ontario. She mentioned that this is a new program that the Foundation is piloting in hopes of getting patients into classrooms to help medical professionals put a face to this rare disease and help them better understand TTP and the patient experience.

At first, I was hesitant. I thought to myself, “is it worth taking a day off work to travel about 4 hours in total to share my story and answer questions students might have in half an hour’s time?” I asked one of my coworkers their opinion about the opportunity and she helped me turn my hesitation into excitement. She told me that by going, it would not only help raise awareness, but it would also be a great opportunity to help medical students get an understanding of how it affects patients and see the personal side of it. This in turn would not only help them treat the disease, but it might also speed the diagnosis of patients in the future should they ever come across a patient in their careers. After hearing my co-worker out, I decided that this was worth doing, even though it was only a brief appearance, so I asked my boss for the day off and decided to go.

On Oct 30th, Taryn picked me up and we made our way to London, Ontario. During our ride, she further discussed this new initiative and what they hoped this program would accomplish. She also talked about the other programs that the Foundation has in place for patients and upcoming intiatives, showing that this Foundation is making strides in spreading awareness and stretching out its reach, not only across Canada, but in other parts of the world as well.

We were a little bit early for the 3:30 class, so we went to grab a coffee at the hospital’s Tim Horton’s and I took some time to read over my speech. At 3:30, we met Dr. William Clark, the professor, in his classroom. After being introduced to the approximately 25 students by Dr. Clark, I made my way up to the podium and shared my story. A few of them asked questions, mainly on whether I was informed properly about what my disease was and how I in turn would explain it now. I told them that it was hard for me to understand how the doctors explained what my disease was and confessed that it’s still hard for me to this day, to explain what it is. After answering the questions, Taryn went to drop off some of the brochures and pins from the foundation and thanked Dr. Clark for allowing us to speak to his class and share my story.

Diana Hermosa sharing her TTP experience.

As I have learned since my sudden diagnosis with this rare disease, there is still so much work that needs to be done. So much more research is needed in order to find out what causes it, what can trigger relapses, how to ease treatment and ultimately, find a cure. In addition, seeing that there isn’t any other foundations dedicated to TTP there is a dire need to further expand the Answering TTP Foundation’s reach – we need to let hospitals, both in and outside of Canada, know that this Foundation exists so we can partner with many more medical staff to better prepare them in caring for TTP patients, from the time of the diagnosis until the end of their treatment. I also hope that through alerting hospitals of this Foundation, that more patients will be able to find this Foundation so that they can learn and connect with others; so that they know they are not alone! They need to know that there is a foundation that exists and that they can be part of this community in order to get that much needed support.

Luckily, thanks to Sydney, the Foundation’s founder, a community for TTP patients and medical professionals exists and this Foundation continues to do great work in supporting, educating and raising funds to fund research. However as patients, I feel that we need to do our part in helping this great Foundation make bigger strides in making this rare disease become more recognized. Together, we can have our voices heard. Although it only affects 3-4 people in 1 million, TTP deserves attention to help in finding better treatments and a cure.

Get started to help today; make your first step by sharing your story, whether you are a patient or supporter. Your story helps others by showing them they are not alone." 

- Diana Hermosa

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