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Kickin' MS with Hematopioetic Stem Cell Transplant
$2,805 raised
5% of $55k goal
17 contributors
0 days left
Ended Jan 31, 2014
I was diagnosed with Primary Progressive Multiple Sclerosis in May 2012, it is slowing paralyzing me. There is no FDA approved treatment in the US, and there is no cure. I am an otherwise very healthy 46 year old female, that’s always been active and ...
I was diagnosed with Primary Progressive Multiple Sclerosis in May 2012, it is slowing paralyzing me. There is no FDA approved treatment in the US, and there is no cure. I am an otherwise very healthy 46 year old female, that’s always been active and has a lot of living left to do. The only hope I have is a Hematopoietic Stem Cell Transplant, which gives me 50-60% chance of stopping this disease. I've been accepted for treatment in Russia and will be admitted on August 19th. Insurance will not cover the cost, so I am asking for help. Here is my story.

May 4, 2012, was the day I heard the words, “you have Primary Progressive Multiple Sclerosis.” I had been waiting for months to finally find out what was wrong with me, why my legs were becoming weak, why I could no longer walk very far, why the fatigue, and had done tons of research, so I knew what those words meant before she told me… my heart sank. This is a very rare form of MS, only 10-15% of MS patients have PPMS; the disease very slowly paralyzes your body and you will die. She then tells me,” There is no treatment or cure.” This can’t be happening to me, I’m 46 years old and have always eaten healthy, have been very active and athletic my whole life.
I decided I needed to take action and see if there were any alternative treatments that might help slow down or stop the disease. I quit a job I loved on June 1st to start the research. First I was not finding anything that looked promising. Then I started reading about diets that had helped other MS patients. Apparently there are trigger foods that people with MS are sensitive to. So I stopped eating Glutens, Eggs and Dairy. I started working out more to try to re-gain some of my strength, and was able to ride my bike again. It seemed to be working, I was getting stronger, and there was hope. But it would only slow it down, not stop it, so I had to keep looking. My disease was progressing, despite all of my efforts. I can now, no longer walk my dog all the way around the block. I try to be as independent as I can, and do all that I can on my own, but I do have to ask for help now, and you can’t imagine how hard that is.
A few months ago I stumbled across a group on Face Book for Hematopoietic Stem Cell Transplant (HSCT) for MS & Autoimmune Diseases. So I started reading one man’s blog that was linked to the Face Book page and looked into HSCT. I discovered that this procedure is the same procedure that has been used for Leukemia patients since the late 60’s and has been done overseas to treat MS patients for several years. It is also in phase III clinical trials at the University of Washington and Northwestern. It has a really good chance of stopping my disease. They harvest stem cells from the patient, and then use a high dose of Chemo Therapy to kill off the immune system and finally inject the cleaned stem cells back into the patient. The body does not remember it had MS. There is even a slight chance that some of the damage will be reversed, very slight, but a chance. I contacted both of the clinical trials in the US and they both rejected me because I have PPMS. So, I started looking into facilities overseas and found several hospitals performing this procedure. After being either rejected or not meeting the requirements to even apply, I was accepted for the treatment in Russia, and will be admitted for testing on August 19th, (also my Birthday, so a good sign). And if I meet the physical requirements; I will be admitted for treatment immediately. I will be in Russia for six weeks and will need someone to accompany me there and then come escort me back home. They have given me a 50-60% chance that this will stop my progression. This is lower than other people with RRMS (Relapsing-Remitting Multiple Sclerosis), but better than the 0% chance I have of stopping it if I do nothing. So, not too bad if you look at it that way.
The treatment is not covered by insurance, so I will need to pay everything out of pocket. I’m not good at asking for help, but this is me fighting for my life, so I will do everything possible to make this happen. The treatment cost $40,000 USD; this does not include air travel, hotels, transportation and follow up care when I return to the US. My goal is to raise $50,000 to hopefully cover all of the cost. I see my new mission in life to help educate others about this disease and the HSCT treatment option. If I raise more than I need to cover the costs, I will donate the remainder someone else seeking treatment. I want to pay it forward.
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