Thursday 3 March 2011

Roadshow: Edmonton, Alberta

Gaining an additional hour is definitely an advantage of traveling west. I was able to leave Saskatoon at 10:30am and arrive at the same local time in Edmonton which meant that I got to sleep in!

My cousin Susan met me at the airport to accompany me on my meetings at the University of Alberta Hospital. We were able to meet with a local Apheresis nurse, a newly diagnosed TTP patient and her 8-week-old baby, and a local doctor.

Terri & Sydney
The University of Alberta Hospital treated 10 TTP patients in 2010. According to local Apheresis Nurse Terri, this was a pretty average number for their facility to see in one year. I am thrilled to report that Terri is interested in Answering TTP initiatives and received confirmation from Dr. Qarni, a local TTP doctor, to distribute our new patient brochure.  Our meeting with Terri took place in the Apheresis unit of the hospital. The room looked to accommodate 1 treatment bed and an office area for nursing staff to complete paperwork.  Like the Apheresis unit I am treated in, at Saint Michael’s Hospital in Toronto, pictures of the children of locally treated TTP patients were hung on the cabinets giving the room a friendly atmosphere.

We were able to meet with a newly diagnosed TTP patient and mother, her 8-week-old baby and family. She has been fighting strong since the birth of her beautiful little girl. Readmitted to hospital recently, she said that the hardest part is saying goodnight to her baby, who is cared for at night by her supportive husband. This new little family is not from Edmonton and is eagerly awaiting their ability to travel home. Moreover, mom and baby hope to travel to visit friends and family across the country during mom’s maternity leave but fear of relapse may interfere with previous plans. The family had a number of thoughtful questions concerning my experience, available treatments and triggers. To supplement the visit I left them with one of the new patient brochures and I sincerely hope that they reach out to connect with us via the Answering TTP community.

The Lab
Dr. Ritchie is a local doctor who treats some TTP patients. I met him previously at the NRBDO (Network of Rare Blood Disorder Organizations) conference in Toronto last November. Dr. Ritchie expressed his support of patients advocating for their care. Dr. Ritchie provided us a tour of his laboratory which includes a biobank holding 600,000 samples in an approximately 12 x 24 foot space. 

Biobank Room
"Hotel" Storage
Sample Log
Each sample is accurately bar-coded, logged into a redundant system and stored to ensure reliability. Each step to log a sample in or out of the biobank is recorded and optimized for automation where appropriate. The tour of his facility is particularly interesting to start the foundations research regarding biobanking for TTP. A biobank forms a foundation for research, as samples are used to test research theory.

It was an enlightening day in Edmonton. We were able meet with key communicators at the hospital and lend some support to a new patient and her family. Moreover, I’d never toured a biobank facility before, and my engineering background loved the opportunity. Seeing one gives more perspective to a potential biobanking project for TTP. Thank you very much to my cousin Susan for her time and interest in our cause.

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