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LAKE MARY, Fla. (WOFL FOX 35) - An afternoon by the pool is typical for Heather and her kids, but there was a time when such an activity wouldn’t have been possible. The mother of two didn’t feel comfortable watching her kids on her own.
"I couldn't walk. I could drag my leg around. I had severe foot drop and spasticity. My hands were very numb and tingly all the time,” she said.
Heather—who has asked that her last name be withheld for privacy purposes—has relapsing remitting multiple sclerosis, the kind that gets worse over time.
FOX 35 first introduced viewers to Heather two years ago. At the time the MS was making it harder and harder for her to do just about everything. Medications weren’t working, but she wasn’t willing to accept her quickly declining health.
“I was planning on going in a nursing home at the age of 26,” Heather said.
She decided to go to Northwestern Memorial Hospital in Chicago instead to have an experimental procedure called hematopoietic stem cell transplantation -- or HSCT. Everything changed.
"I have had no disease activity in two years. I have been off medication for two and a half years. I have been fine," she said in April of 2016.
Heather thinks she stopped her disease in its tracks.
“Before the transplant I could walk maybe 40 to 50 steps before I needed to hold on to something. Now I walk anywhere from three to five thousand steps a day and I'm fine.”
HSCT involves aggressive chemotherapy and harvesting—then returning—the patient’s stem cells in order to reboot the immune system, which attacks the brain and spinal cord in people with MS.
"It's like flipping a switch,” Heather explained. “Just a quick response for the immune system that's been depleted really fast...bringing it back. Like...forget about those bad cells, we're going to reproduce with the good cells."
Dr. Richard Burt is leading the HSCT clinical trial. He recently published his research in the Journal of the American Medical Association.
Researchers analyzed outcomes for 145 patients and found that 80 percent of them were attack-free for at least four years after the procedure. About 87 percent of those patients stopped seeing their MS-related disability get worse. More than half saw significant improvement in their disability.
Dr. David Honeycutt told FOX 35 HSCT “shows a lot of promise.” Honeycutt is the medical director of the MS Center of Greater Orlando. He hasn’t participated—or sent any patients to participate in—the HSCT clinical trial. Honeycutt said experimental treatment can be an alternative for MS patients if nothing else is working.
"Those are the people that might be the ones who have failed pervious therapies that are already approved...that would consider a stem cell transplant at this point,” Honeycutt said.
That was the case Heather. She decided to try the experimental procedure, rather than accepting a life sentence with a debilitating disease.
"It's just such a serious medical procedure, but I still look back and I just think...I can only imagine what my life would have been if I didn't do it,” she said.
Heather said her insurance paid for the procedure. HSCT is listed on the MS Society’s web page as a promising treatment. More information can be found by clicking here. Heather has created a Facebook page so that others can learn about her experience with HSCT. It can be found by clicking here.
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On the web:
http://www.nationalmssociety.org/Research/Research-We-Fund/Restoring-What-s-Been-Lost/Repairing-Damaged-Tissues/Stem-Cells-in-MS
www.facebook.com/heathernicolehsct