Helping In Memory Of A Stranger

Yesterday it was posted that one of the members of the Stiff Person Syndrome group I have joined passed away. Although I never spoke with Tracy nor had the opportunity to see any posts from her, my heart goes out to her family and friends.  We who are fighting this battle can sympathize and place ourselves in her place and for the family who had to watch a loved one taken far too soon from their lives.

As I have mentioned this condition can be so confusing because of the severity and different stages that neurologist are trying desperately to understand. Each person fighting this condition knows themselves how everyone has a unique set of symptoms and prognoses but we all have a demon bond known as Stiff Person Syndrome we are fighting.  What makes it so hard too, is there is not enough people to do a proper study to understand the complexities and underlying cause other then they believe it to be autoimmune.

They are currently doing studies with Stem Cell Transplant, here in Canada and in other places in the world, but unlike other countries where our medical system is free, (to a degree).   There are many others who are desperately trying to raise money to risk their lives in the hope that the transplant will possibly (I say possibly because it is not guaranteed) cure them.  Two of these wonderful and brave people I have not spoken to but know how desperate their plight has become are willing to take that risk in order to have a chance.  Please see their stories and fundraising pages under my other links, on this page.(UPDATE I HAVE REMOVED THEIR PAGES AS THEIR FUNDRAISING CAMPAIGNS ARE NO LONGER ACTIVE, DUE TO NOT BEING ACCEPTED INTO THE STUDIES)  You can also donate to the Stem Cell Foundation.

The transplant itself does not come without a high risk I have been chatting with a brave person here in Canada who will be the third person to try this procedure in Canada for a chance of being cured from Stiff Person Syndrome.  The procedure itself requires doctors to take a person's immune system down to zero and then rebuild their immune system back with cells that have been harvested and sterilized from their system, prior to starting very strong doses of chemotherapy. Once their immune system has be wiped out they re-transplanted their cells back into their body in the hope it will work much like a new born babies system that is able to fight against germs and pathogens.

The risks as I mentioned can come at a high price from infections, organ shut down and can cause death.  To quote in part Dr. Atkins from the Ottawa Hospital Research Institute (from a news article on CNN) "this procedure is only reserved for  those with only the most severe autoimmune diseases. And Dr. Atkins decided Stiff Person Syndrome fit that bill and was willing to perform the stem cell transplant. His first patient is symptom-free and his second patient is symptom free but still needs to take a few of her medications." Dr. Atkins is cautious about saying stem cell transplantation is the definitive treatment for Stiff Person Syndrome.  The rarity of the disease makes it difficult to find research funding - not to mention participants.

To those brave people who are willing to try for all of us to fighting this disease, I urge you to help if you can. If you are unable to give money please message me if you can think of ways for them to fund raise, so I can pass on ideas to them.

 I was never the type of person to come into the lime light before and ask for help but as I progress in this condition I can't help but feel the passion to step in that light and for everyone fighting this demon known as Stiff Person Syndrome.  And to have been told I would not qualify for the test studies; this is my way of giving back to a community of small but brave people who are fighting for their lives. I don't want to wake up tomorrow to read of another person's passing who lost their battle without hope.