- Pin it
- SubscribeUnsubscribe
- Embed
Vicki W hasn't added a 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.
Highlights
See all activity18Activity
Delete media item?
Delete this item from the media gallery? It will also be deleted from any related story update.
Set as ?
The campaign video will appear in social media and email.
The campaign cover picture will appear in social media and email.
The will appear at the top of your campaign page and in social media and email.
Reset ?
It will be removed from the top of your campaign and won't be used as default in social media and email. The will remain in the media gallery.
Embed
Share a link
Delete update
Delete this story update?
Any pictures or videos will remain in the campaign's media gallery.
Report campaign
Report submitted
Thank you. We take reports like yours very seriously. Our goal is to keep the community safe.
Please know that we may contact you for more information, but that we won't notify you personally of our decision. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Thank you. We've already received your previous report. If the campaign remains available within a few days, it's likely that we determined it not to be in violation of our policies.
Tell us about the problem. Please fill in both fields below.
Record a video
Upload a video
Nothing grabs attention for your cause like a personal video. Take a minute or two to record one now. Record a short video message of support. Or upload one from your device. You can preview or redo your video before you post it.
Nothing grabs attention for your cause like a personal video. Upload a short video message of support. Upload a short video message of support. Or record one right now.
- Most effective video length: about a minute.
- Maximum length: 5 min.
- You can preview or redo your video before you post it.
Heads up! The existing video will be replaced.
Email your friends
Join our team
Tell people why our cause matters to you. Your personal message will encourage others to help. Easy, effective, optional.
Say it in video
Short personal videos by supporters like you are incredibly powerful. Record one right now and you'll help us raise more money. Easy, optional, effective.
Add a personal goal
Set a personal fundraising goal. You'll encourage more contributions if you do. And rest easy. There's no obligation to achieve your goal or bad consequences if you don't. Easy, optional, effective.
We have a video!
Video thumbnail
We'd love to show you our campaign video. Want to take a look?
, you're already on the team.