- J
What We Know
I’m Lindsay and I have a rare form of myositis. We’re not sure what caused it to start up in 2013 but treatment options haven’t changed since then. My medical team at the Mayo Clinic treats this autoimmune disease with immunosuppressants that essentially turn off the immune system. There are ~7 drugs that they try in a certain order and I’ve tried three of them with no improvement. Alternative medicine— therapies used to strengthen the immune system— has actually minimized my inflammation and normalized my blood work, but my muscle weakness still persists.
What’s Next
Stem cells are at the forefront of possible cures for many diseases. They’re super cells that live in our bone marrow and fat with the ability to repair and replace damaged ones. Scientists aren’t sure why our own bodies don’t release them to help fight chronic illnesses but we can find, remove, and reintroduce them now. Stem cell therapy is not yet FDA approved which means research hospitals like Mayo are only doing it for clinical trials, and most clinical trials in the US are for cancers.
My trusted MD PHD in Seattle has recommended I try adipose stem cell therapy. A doctor will go into my stomach fat, collect millions of stem cells, harvest them, and then reintroduce them into my body via injection into my affected muscle groups and an IV into my blood. Those super cells will find the damaged ones and fix them. It’s way less invasive than bone marrow extraction, has less risk of complications, and there are more stem cells in fat than in marrow.
What I Need to Make This Happen
All stem cell procedures outside of clinical trials are self funded; insurance companies will not cover any portion of them. Trials for rare diseases like mine are probably at least a few years away so I’m essentially trying to fund my own study to answer: Does adipose stem cell therapy mitigate myositis symptoms, specifically muscle weakness? If it does, it could get me out of my wheelchair and back to work. I only have $2,500 to go to cover the full procedure and every little bit is a huge help!!
What are the Risks?
I discussed this with my Mayo team last week and we’ve identified two main ones.
(1) Nothing improves: there’s next to no research on myositis as is and even less on stem cells for treating it. So the outcome could be miraculous but it could result in no change... that’s the same for any of the drugs left they try too. I’ve seen pretty incredible testimonials like this one but every person is different. Because they use one’s own cells I have yet to encounter reports of negative side effects.
(2) Infection from the stomach incision: this is true for any surgical procedure. My Mayo rheumatologist says that if I trust my referral to this clinic and we keep an eye on the incision it should be fine.
The Bottom Line
While we were discussing this last week, I told my sister that if I truly believed I couldn’t get better...if I truly believed my body couldn’t overcome whatever is causing my myositis...I’d accept my fate to be disabled for the rest of my life and adjust my dreams accordingly. But processing everything with a rational, scientific, perspective, I can say with the utmost certainty that I believe that this is beatable. And I believe that adipose stem cell therapy is the right next move. Thank you so much for believing in me too!
***For those interested in donating without the transaction fees I’m also on:
Venmo, @lindsaybowe
PayPal, [email redacted]
I’m Lindsay and I have a rare form of myositis. We’re not sure what caused it to start up in 2013 but treatment options haven’t changed since then. My medical team at the Mayo Clinic treats this autoimmune disease with immunosuppressants that essentially turn off the immune system. There are ~7 drugs that they try in a certain order and I’ve tried three of them with no improvement. Alternative medicine— therapies used to strengthen the immune system— has actually minimized my inflammation and normalized my blood work, but my muscle weakness still persists.
What’s Next
Stem cells are at the forefront of possible cures for many diseases. They’re super cells that live in our bone marrow and fat with the ability to repair and replace damaged ones. Scientists aren’t sure why our own bodies don’t release them to help fight chronic illnesses but we can find, remove, and reintroduce them now. Stem cell therapy is not yet FDA approved which means research hospitals like Mayo are only doing it for clinical trials, and most clinical trials in the US are for cancers.
My trusted MD PHD in Seattle has recommended I try adipose stem cell therapy. A doctor will go into my stomach fat, collect millions of stem cells, harvest them, and then reintroduce them into my body via injection into my affected muscle groups and an IV into my blood. Those super cells will find the damaged ones and fix them. It’s way less invasive than bone marrow extraction, has less risk of complications, and there are more stem cells in fat than in marrow.
What I Need to Make This Happen
All stem cell procedures outside of clinical trials are self funded; insurance companies will not cover any portion of them. Trials for rare diseases like mine are probably at least a few years away so I’m essentially trying to fund my own study to answer: Does adipose stem cell therapy mitigate myositis symptoms, specifically muscle weakness? If it does, it could get me out of my wheelchair and back to work. I only have $2,500 to go to cover the full procedure and every little bit is a huge help!!
What are the Risks?
I discussed this with my Mayo team last week and we’ve identified two main ones.
(1) Nothing improves: there’s next to no research on myositis as is and even less on stem cells for treating it. So the outcome could be miraculous but it could result in no change... that’s the same for any of the drugs left they try too. I’ve seen pretty incredible testimonials like this one but every person is different. Because they use one’s own cells I have yet to encounter reports of negative side effects.
(2) Infection from the stomach incision: this is true for any surgical procedure. My Mayo rheumatologist says that if I trust my referral to this clinic and we keep an eye on the incision it should be fine.
The Bottom Line
While we were discussing this last week, I told my sister that if I truly believed I couldn’t get better...if I truly believed my body couldn’t overcome whatever is causing my myositis...I’d accept my fate to be disabled for the rest of my life and adjust my dreams accordingly. But processing everything with a rational, scientific, perspective, I can say with the utmost certainty that I believe that this is beatable. And I believe that adipose stem cell therapy is the right next move. Thank you so much for believing in me too!
***For those interested in donating without the transaction fees I’m also on:
Venmo, @lindsaybowe
PayPal, [email redacted]