Monday 5 May 2014

aHUS Canada Meeting

aHUS patient (Michael) giving update speech
On Saturday, April 26th, 2014, both myself (Taryn, Charitable Programs Director) and Gergana (TTP Patient and Answering TTP Foundation Board Member), were invited to attend aHUS (atypical Hemplytic Uremic Syndrome) Canada’s 2nd Annual Meeting.  As you might not be aware, TTP and aHUS are closely related blood disorders and are so similar in presentation that it can make it difficult for doctors to differentiate between them. It is not uncommon for patients to be diagnosed as having one disorder, only to be “re-classified” or “re-diagnosed” at a later date. 

Both disorders fall under the umbrella term Thrombotic Microangiopathy (TMA). Check out our previous blog “TMA – What Does it Mean…” HERE for more explanation.

The day started bright and early at 8 am with breakfast and introductions, and Gergana and I were able to meet and speak with some aHUS Canada board members as well as aHUS patients. It was amazing to hear how many members of this small patient group were first diagnosed as having TTP and then years later were re-classified as aHUS. I even had the chance to talk to one patient who was currently unsure of her diagnosis, as her medical professionals had yet to classify her.
Dr. Christopher Patriqui

Throughout the day, there were a lot of informative presentations on various topics ranging from access to Solaris, a treatment used to treat aHUS patients to a clinical update presentation given by Dr. Christopher Patriquin, which was packed with information on both TTP and aHUS and Compliment activation.

Overall, it was a very informative day that helped both the Answering TTP Foundation and aHUS Canada see where there may be overlapping goals.

Thank you again for the invite, aHUS Canada!

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