My son Brandon’s health has been rapidly declining. In 2014 he suffered from a rare nervous system disorder (POTS Syndrome) that made him unable to stand for more than 30 seconds without passing out. It took a year to recover, but the problems were just beginning. In May of last year Brandon began to significantly lose his eyesight and he started experiencing numbness all over his legs and he was diagnosed with Multiple Sclerosis (MS). Active lesions were found on his optic nerve and spine. Inactive lesions on his brain were also discovered, which explained his problems in 2014. Brandon has also tested positive for Lupus and two other autoimmune disorders that affect his hair, eyes, and skin. In the last few months, another MS attack damaged Brandon’s vision in his left eye again and he had another attack on his legs, this time causing serious walking problems. The situation has become urgent, but there is hope in a treatment that could stop the disease from progressing.
Brandon’s MS is extremely aggressive and his doctors fear that he could be as little as six months away from permanent disability. Brandon’s only hope for a normal life is a treatment known as a Hematopoietic Stem Cell Transplant (HSCT). It’s a chemotherapy procedure that will delete Brandon’s current faulty immune system and “reboot” it with his own, bone marrow derived, stem cells. This will lead to an immediate halt of all disease activity and there is a better than 90% chance that Brandon will make a full recovery. Unfortunately, there is now a three year waiting list due to recent media coverage about the success of this treatment (BBC, 60 Minutes, etc.) and patient word of mouth. Fortunately, the hospital that will perform Brandon’s transplant has had an opening this summer, which they have offered him due to his rapidly deteriorating health. HSCT requires 35 days of hospitalization and is expected to cost over $60,000. Insurance does not cover this procedure and these costs are more than Brandon can handle alone.
October 21, 2017
On Monday I find out if HSCT has successfully stopped my multiple sclerosis.
This will be the first MRI that I’ve done since my treatment a year ago. Around 15% of patients with relapsing-remitting multiple sclerosis will have a relapse after HSCT. I don’t have any new symptoms, so the odds are good the test results will be positive.
I’m still recovering, but it’s become almost surreal how much my health has improved from where I was a couple of years ago. Fingers crossed everything checks out alright on Monday!
October 17, 2017
1 year later!
A year ago today, after four days of chemotherapy, I had my stem cell transplant. Even though I was officially diagnosed with MS only a little more than two years ago, I was sick a long time. Out of control lesions all over my face, massive gut inflammation that made me barely able to eat, and severe autonomic dysfunction that got so bad that it made it difficult or even impossible to stand or walk for a year. While recovering from that, I tested positive for lupus and was diagnosed with aggressive multiple sclerosis that was quickly taking my eyesight and would have likely confined me to a walker or wheelchair by now had I not got this treatment. Everything autoimmune, and all born out of the same “bad soup”.
And today, looking back, this all feels like it happened to another person. That’s not to say that I’ve completely recovered. My body can be unpredictable sometimes, but the difference is night and day. I can walk, I can run, no more lesions on my face, no more gut problems, I no longer experience crippling fatigue and brain fog, and my eyes have healed. I spent more than half a decade just trying to survive, and now after HSCT, my day is finally not consumed with illness. I’m able to think about my future. I have my life back.
I’m one of the lucky ones. As bad as it was, it could have been so much worse. My dad has been completely paralyzed from the chest down for nine years due to autoimmune disease (MS/NMO). This summer he was diagnosed with stage 4 lymphoma. His cancer was directly caused by the medication his doctor has had him on the last nine years, azathioprine. Because of his paralysis, he’s not able to do the chemotherapy he needs to treat his cancer. He has been getting monthly infusions of rituximab, which will hopefully help slow it down.
Had he gotten the same treatment I did a year ago when his problems first started, he would, in all likelihood, be walking today. HSCT was around back then but deemed too dangerous by the medical establishment. Ironically, the same chemotherapy drugs that are used for HSCT, cyclophosphamide, and rituximab, are what he needs today to treat his cancer, but is unable to receive because of the progression of his autoimmune disease. It feels like I won the lottery, while he and so many others have lost.
Millions of people suffer from autoimmune diseases that can be stopped with HSCT, and only a relative handful have been able to be treated. Please help spread the word.
On the 22nd of this month, I am flying back to Moscow for my one-year follow-up MRI. Dr. Fedorenko will compare the results to the MRI I got before HSCT to make sure there is no new disease activity and also to see if my body has been able to repair any of the old damage. I will keep all of you updated on how it goes!
I really want to thank you all again for helping make my treatment possible. It has completely changed my life, and it would not have happened without your support!
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June 15, 2019
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March 8, 2016
Hey Brandon, This is going to be a good thing. I feel really excited about it. I love you Son.