MOORHEAD — Susan Stefonowicz has tried the go-to injections, infusions and oral medications to treat her multiple sclerosis, but recently, she took a step few others like her have taken.
She received experimental stem cell therapy at Clinica Ruiz in Monterrey, Mexico, in an effort to stop the progression of the disease and possibly give her a chance to recover her strength.
Stefonowicz, 56, uses a wheelchair and has limited use of her hands. She resides in Moorhead's Farmstead Care Assisted Living facility.
“If I could get walking again, I’d be on cloud nine,” she said with a hopeful smile.
The treatment is known as hematopoietic stem cell transplantation, or HSCT, for MS.
It attempts to “reboot” the immune system, which damages the brain and spinal cord in people with MS, according to the National MS Society website.
The treatment is still in the clinical trial phase in the U.S., but at the facility in Mexico and a few other parts of the world, it’s been available for years.
Stefonowicz hasn’t been able to work for some time and relies on Social Security disability, but she was able to pay for the $52,000 procedure and expenses through a GoFundMe campaign, fundraisers and donations.
Initially, Ruth Stefonowicz was apprehensive about her daughter’s decision to pursue the treatment.
“Once she started plugging into it, I was convinced that it was a good place to go,” she said.
A difficult diagnosis
Stefonowicz was diagnosed with the autoimmune disease around 2004 after experiencing numbness in her feet that spread through her legs and torso.
In retrospect, however, she had symptoms well before that, including stumbles and missteps.
“I’d be kind of embarrassed and self-conscious, but nobody noticed,” she said.
The mother of three boys was around 40 at the time, with her youngest son being 4 years old. Stefonowicz and her husband divorced not long after, she said.
“She had three kids, and she was taking care of them,” her mother said.
Stefonowicz had relapsing-remitting MS, where the neurological symptoms worsen and then improve.
“You get vacations from it a little bit,” Stefonowicz said.
In 2016, she started having trouble getting on and off a friend’s motorcycle. That December, she gave up driving because she couldn’t get the key in the ignition.
In fall of 2017, she was diagnosed with secondary progressive MS, where the symptoms continually worsen, which was “a blow,” she said.
At Clinica Ruiz in Mexico, more than 600 patients have received stem cell therapy to treat MS, according to its website.
The facility boasts “positive results” in more than 75% of patients and a mortality rate of less than 1%.
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Stefonowicz and her sister, Pamela Passariello, of Bismarck, traveled there in mid-November for a one-month stay.
During the procedure, the patient has stem cells removed from their own bone marrow or blood, and their immune system is depleted through chemotherapy.
Then, the stored hematopoietic stem cells are reintroduced to the body, where they migrate to the bone marrow and eventually repopulate the body with immune cells, according to the National MS Society.
Stefonowicz has to remain mostly indoors and away from anyone who is ill while her immune system rebuilds. She lost her hair due to the chemotherapy drugs.
She said it could take three to six months, maybe longer, to see improvement, including a halt in progression of the disease.
If her MS doesn’t worsen, she will have more opportunities to regain strength and mobility through physical and occupational therapy, she said.
Hoping to regain the little things
Stefonowicz said doctors locally advised her against seeking the treatment because it isn’t yet established in the U.S.
One clinical trial is underway at Northwestern University in Chicago, and additional trials are expected to start this year in Cleveland, Seattle and other locations, according to the National MS Society.
Stefonowicz said she felt better while in Mexico because she was more active, staying in an apartment near the clinic most of the time. Her sister gave her minimal assistance getting into bed each night.
Back in Moorhead, the facility where she lives requires two employees to transfer her any time she gets in and out of her wheelchair.
While that policy is for her own safety, she believes it also makes her weaker.
She also receives daily help from employees of Lutheran Social Services of Minnesota.
A meal can take hours because she is persistent in trying to feed herself as much as possible.
“She doesn't give up easily,” her mother said.
It’s the little things people take for granted — being able to get dressed or brush their own teeth — that Stefonowicz longs to regain.
No matter the outcome, she'll have no regrets.
“If it doesn't work, at least I can say that I tried,” she said.