PEMBROKE – Years before she got her life-changing multiple sclerosis diagnosis, 39-year-old Heather Hart said there were signs. One morning in 2011, she woke up and her right arm was completely numb, she said, and didn't return to normal for four days. Another day she said she would notice her vision slipping, but didn't think much of it. It wasn't until she woke up and felt like hot water was rushing down her legs that her doctors knew something was seriously wrong.
Her doctors found multiple lesions in her lower back through a series of MRIs and diagnosed Hart with multiple sclerosis in 2013. Now, after more than four years of various treatments, medications and worsening conditions, Hart is putting her faith in a stem cell treatment that would send her to Russia at the end of this year. The treatment, like many others that use stem cell transplant, has not been approved by the U.S. Federal Drug Administration.
"I have to stay positive," Hart said. "I'm very hopeful for it. I just want to get there."
Multiple sclerosis is a rare disease that attacks the brain and spinal cord, causing permanent damage to nerves. Patients usually lose their ability to walk or control their bodily functions, according to the Mayo Clinic. There is no cure for multiple sclerosis, but treatments can help speed recovery from attacks and manage symptoms. Hart is a patient of Dr. Joshua Katz, a neurologist at the Elliot Lewis Center in Boston.
"We went through two different medications and I was still having lesions develop," Hart said. "I was still having problems with progression, with falling. I was in and out of the hospital. They joke at Brockton Hospital that I should have my own suite."
As Hart exhausted approved treatment methods in the United States, she started looking into more experimental options outside the country. She soon met Amy Breault, a fellow Pembroke resident, who had success with a stem cell treatment at the National Pirogov Medical Surgical Center in Moscow.
Breault, now 34, was 17 years old when she was first diagnosed with multiple sclerosis. Her condition had progressed beyond Hart's by the time she went to Russia for treatment in 2016. Since she returned, she said her symptoms have stopped worsening and she is no longer regularly taking medication.
"By the grace of God I was finally accepted," Breault said. "It stopped it from progressing, but I also just went to the eye doctor and she said the inflammation in the nerve in my eye has gone down significantly. It's almost reversing what happened to me 17 years ago ... If I didn't have it, I would be in a wheelchair for sure."
Aggressive stem cell treatments like the one Hart is seeking can stop progression of the disease for years, but risks are usually high, according to the publication Multiple Sclerosis News Today. The process involves taking stem cells from the patients' own bone marrow, using chemotherapy to "reset" the immune system and injecting the cells back into the body. The publication says the process usually reduces the risks of relapse for years, but some experience harsh side effects, or even die, as a result of the chemotherapy and weakened immune system. The total time spent in Russia is four to six weeks, much of it in an isolated hospital ward.
In order to have the stem cell transplant, Hart must flush her system of all multiple sclerosis medications and stop regular treatments six months before her Nov. 12 hospital admission date.
"I'm not scared about going; I'm not scared about the treatment; I'm scared about not making up enough (money) to go on my date and having to push it off, and having something happen to me physically because I put the medication aside," she said. "If I don't have the meds, I could lose vision, my walking could get worse than it already is."
Because the treatment is not approved in the United States, Medicaid will not not help pay for the $50,000 procedure. Hart has launched an online fundraising campaign and is organizing events, hoping to raise a total of $60,000 for the treatment and travel.
There will be a fundraiser for Hart at the East Bridgewater Commercial Club on Friday, June 15 at 8 p.m.
Mary Whitfill can be reached at mwhitfill@ledger.com.