Saturday 22 February 2014

We are the ones who can help...

Pam Smith
In 2006, Pam Smith went to the hospital thinking she was having a stroke. Three days later, she was diagnosed with a rare disease that neither she, nor her family, had ever heard of called Thrombotic Thrombocytopenic Purpura (TTP). Being that TTP is so rare, the treatment (Plasma Exchange) Pam required was (and still is) not available at every hospital. Pam had to be transferred to a hospital in a different province to receive treatment.

Five years after her initial diagnosis, in 2011, Pam experienced her first and second TTP relapses within 4 months of each other. During one of her treatment sessions, a staff member at the hospital where she was being treated told her about a website for a Foundation that was dedicated to TTP patients and supporters, the Answering TTP Foundation.

Since learning about the Answering TTP Foundation, Pam has been very involved with the Foundation where and when she is able to. Below is her story of volunteerism within the Answering TTP Foundation.

Why I started…

As a survivor of TTP, I knew as soon as I learned of the Answering TTP Foundation that it was something I wanted to get involved with. I started off small by submitting my patient story in the hopes that my story would help give TTP a face and promote TTP awareness.

After sharing my story, I started to brainstorm ways that I could get more involved with the Foundation without giving up all my spare time and tiring my self out. That’s when I discovered the Foundation’s Walk to Answer TTP Together. This would be how I could get more involved to promote awareness of TTP, while also helping to raise funds for research, support and education. (For those of you who might be new to the blog or the Foundation, the Walk to Answer TTP Together takes place every September. Anyone, anywhere, at any stage of life, can participate in this walk, as there is no set distance to complete. People around the world can register to walk any distance on the same day for two hours, to help raise awareness and funds for TTP). This was a perfect way for me to start spreading awareness in my local community with the help of my family and friends. This has become an annual event that we continue to participate in.

In addition to participating annually in the walk, I have also tried to generate TTP awareness in my community by: sharing information on bulletin boards at the hospital where I was diagnosed; soliciting attention from the local media, which has led to me being interviewed on both TV and Radio stations; and, helping with local blood drives. All of these opportunities have helped me to spread TTP awareness while also growing my personal network. In fact, through a blood drive I helped with, I was able to encourage a number of staff from the blood clinic join me in my 2013 Walk to Answer TTP Together.

Why I continue…

During my 2013 Walk to Answer TTP Together, I was approached by an acquaintance who told me his sister-in-law was currently being treated for TTP. She had initially gone to the hospital where I was diagnosed, the same hospital I often hang posters and information at. Unfortunately, unlike me, she was misdiagnosed and overlooked until her kidneys began to shut down. Instead of letting this information discourage me, I have allowed it to empower me. I want others to be aware of this serious and potentially deadly disease. As a TTP survivor, I know it is up to our small TTP community to promote awareness to help ensure that diagnoses are made as quickly as possible so that patients can receive life-saving treatment. 
TTP patient order set package

Upping my volunteer game…

A few months ago, I read that the Foundation had completed the first ever TTP patient order sets and was piloting the distribution of these order sets to Hospital Emergency Rooms across Canada. Wow, I thought, what a great way for me to get more TTP information out around my community and Province. I wrote to the Foundation explaining what I would like to do, and asked if I could distribute the packages in my Province in person. The Foundation was really excited about my offer, and sent the TTP order set packages right out to me. I spent the following weeks making trips around the Province, visiting hospitals to share my story and dropping off the TTP order set packages.

Before setting out on my new volunteer mission, I was fully prepared that I would probably not be welcomed with open arms at each hospital I visited, but I was determined not to let that discourage me. It was, and still is, my hope that the next time someone arrives at any one of the hospitals I visited, presenting with TTP symptoms, that a doctor or nurse will remember having heard about TTP from me.

I went to 5 hospitals to distribute the Patient Order Sets and was met with mixed reactions. It was tough when I was not taken seriously, and felt that the package would never get past the gatekeeper to the doctors who will ultimately diagnose TTP. My two best experiences while handing out the packages took place at the Island EMS and Polyclinic.

At Island EMS, I met with the General Manager who took the time to speak with me privately in his office. He was very interested in the package and hearing about my experience. He told me they would use the information in their training sessions.

While at the Polyclinic (the Polyclinic is the largest, non-hospital, medical center in Charlottetown, PEI) I met with the main receptionist who agreed to distribute TTP information cards along with a photocopy of a short letter I wrote about TTP and the Foundation’s website to all the doctors.

Closing thoughts…

I am excited and proud that my family and I have been able to distribute a lot of information around our small Province. I feel like I was stepping outside my “comfort zone”, especially with the TV and radio experiences, but I knew that something needed to be done.

If you or a family member suffers from TTP, please do all you can to get the information out to your community. We are the ones who can help others get a quicker diagnosis before other complications occur.

- Pam Smith

To find out more about getting involved and to get involved, fill out our Volunteer Information Form or email us at

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