Hi! Jessie Simmons here. As most of you probably know, I have multiple sclerosis.
For twenty years I kept the symptoms pretty much arrested with diet, exercise, and occasional medication. (I can report that kale is overrated.) About 18 months ago, I started to lose the ability to walk. 12 months ago, the disease progression became very serious. The next MS attack will likely put me in a wheel chair and/or take my sight.
Fortunately, there is now a medical procedure that will arrest new disease progression by an astonishing degree—86% or more. This procedure is called HSCT (hematopoietic stem cell therapy).
Unfortunately, HSCT is not available in the United States. You must travel to the UK, Russia, China (yikes!), or Mexico. Thus, insurance is of no use for this treatment. (So much for 22+ years of continuous employment and insurance premiums.)
Because a portion of my funding fell through, I’m turning to you and others for help at this moment. Already I have raised $25k of the $64k goal.
If you’re able to give (anonymously if you like), please do so here. Because GTF (this site) is a 501(c) organization, your donation is tax deductible. (YA!) You will receive an IRS-ready receipt immediately after donating.
If you keep reading, you’ll find greater detail about HSCT, its non-availability in the US, my story, and how my experience might help others in need of HSCT. Also below you’ll find scientific and anecdotal evidence supporting the efficacy of HSCT. Please spread the word about HSCT!
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MS is a disease of the immune system. For reasons poorly understood, the immune system gets confused. Mistaking its own nervous tissue as “foreign,” the immune system attacks myelin, over time destroying the brain’s and/or the spinal cord’s ability to communicate with the body.
Until a few years ago, I had only relapsing-remitting symptoms. With time and therapy, they stopped. (Blindness in one eye that lasted a month or so, legs that felt like wet cement resulting in the temporary inability to walk, and so on.) I got “mostly better” after each hit, was grateful for my improvement, and kept on living. However, 18 months ago, all of the yoga, meditation, healthy eating, and medication stopped working. The attacks kept coming. And the symptoms got dramatically worse.
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RE-BOOTING THE IMMUNE SYSTEM
While there is no known cure for MS, the medical community is getting better at resetting the immune system using chemo and stem cells. The “reset” or rebooted immune system has minimal memory of what it was fighting (itself) and does not “resume” the battle. MS is thus arrested. This basic HSCT procedure is currently being used to treat certain types of leukemia and some other forms of cancer here in L.A. However, it will be years before HSCT for MS is 1) available in the States, and 2) covered by insurance. (My personal UCLA neurologist of twenty years only posted her support of HSCT for MS this month!)
As you can well imagine, the reasons for this shocking lag in MS treatment in the US is a web of financial interests and general lack of public awareness and action. (The scope of this story is way too complicated for this page! My neurologist, one of the acknowledged best in her field, pointed at the nature of the problem when she explained that she could not publicly support HSCT for MS until she resigned from UCLA for a different job.)
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On a personal level, going public with the reality of my disease is embarrassing and frightening. This is another aspect of disease itself—shame. To ask for help–to admit so-called defeat–is extraordinarily difficult. Not in our social programming. But my options are limited. And maybe, by sharing my experience, I can play a role in making HSCT available to other MSers here in the US. Shame, silence, and ignorance are all deadly but unnecessary aspects of any disease.
Any and all support you might be able to give will be very appreciated. If you happen to know someone with MS, please tell them about HSCT. For those with modest symptom expression, there is a real chance to avoid function loss altogether! Further, when you compare the positive recovery response of 86%+ to a morbidity rate of 0.23%, this procedure posts stats more promising than all available medication protocols.* (Follow the links below for more!)
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https://jamanetwork.com/journals/jama/fullarticle/2720728
https://www.uclahealth.org/neurology/dr-barbara-giesser-research-into-nonmyeloablative-hematopoietic-stem-cell-transplantation-as-a-treatment-for-patients-with-multiple-sclerosis
https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis
*All content found on this page, “Help Jessie Halt MS w/HSCT,” including text, images, audio, or other formats were created for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.