"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."