MS patient aims to raise awareness, funds for treatment

March is Multiple Sclerosis Awareness Month

By: Andy Kozlowski | Madison - Park News | Published March 14, 2016

 Christy O’Sullivan, right, with her sister Shae O’Sullivan and dad Mike O’Sullivan, visits Florida earlier this month. Christy is currently fighting multiple sclerosis and raising money for an alternative treatment in Mexico.

Christy O’Sullivan, right, with her sister Shae O’Sullivan and dad Mike O’Sullivan, visits Florida earlier this month. Christy is currently fighting multiple sclerosis and raising money for an alternative treatment in Mexico.

Photo provided by Christy O’Sullivan

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MADISON HEIGHTS — Christy O’Sullivan has never been one to sit still. So when she learned that she has multiple sclerosis — a progressive disease that can happen to anyone at any time, where the immune system attacks the body and causes lesions on the nerves, leading to a variety of debilitating issues — she didn’t want to wait for it to get worse.

The 29-year-old Madison Heights resident decided to take matters into her own hands, looking for treatment beyond the limited options available in the U.S. She believes she has found the answer in Mexico, where people from  around the world go for a procedure that allegedly has a high rate of success in halting the disease where it’s at — not reversing the effects already there, but preventing them from progressing further.

“I won’t let this take over my life,” Christy said. “I wanted to be proactive from the get-go and keep moving on this. When you’re in this position, you’re fighting for your quality of life.”

To raise money for her treatment, Christy has set up a GoFundMe page at www.gofundme.com/hsct2bmsfree. The treatment in Mexico is currently not approved by the U.S. Food and Drug Administration, although Christy anticipates it will be in the coming years. A clinical trial is reportedly underway in Chicago, but Christy said she does not qualify for it. Since it’s not approved by the FDA at the moment, Christy’s insurance won’t cover it. Along with the price of a monthlong stay in Mexico, the cost is daunting.  

The procedure will involve extracting her own stem cells and purging her immune system with four days of chemotherapy — something she’s not keen about, being a person who prefers holistic medicine. But she said it’s still preferable to the alternative of constantly taking immunosuppressants, which have only a 30 percent chance of slowing the disease and which weaken the immune system, leaving one more vulnerable to illnesses like the flu.

After the brief round of chemo, the stem cells will be reintroduced to her body, rebuilding her immune system so that it no longer attacks her nerves. The procedure may require four to six weeks of quarantine to minimize exposure to the outside world while her immune system is compromised.

Staying still that long might be the hardest part for Christy, a restless athlete who is constantly in motion. She recently took up CrossFit and does 5K runs, kickboxing and gymnastics. She was diagnosed with MS in May 2014, but the symptoms appeared a year or two prior. At first, she thought they were the result of working out too hard. She felt dizzy and delusional, constantly forgetting things and repeating herself. Her vision blurred and her legs numbed, and a tingly sensation ran up and down her spine. She wondered why it took her so long to recuperate compared to others.

Then, on a trip to Florida, she laid out in the sun for a week. She thought she had gotten tanning oil in her left eye because it was blurry and irritated for days. This finally prompted her to visit the doctor, who sent her to the hospital for an MRI. They diagnosed her with optic neuritis due to a lesion on her optic nerve. She was put on an IV steroid for days and had to have a spinal tap. Then it was confirmed that she has MS.

There are different types and degrees of MS. Christy has relapsing remitting, meaning the issues come and go, often triggered by heat and/or stress. The concern is that the condition could continue to worsen. Now the woman who once medaled in gymnastics fears she could lose her ability to move freely, among other things. 

Suzanne O’Sullivan, Christy’s mother, describes her daughter as a social butterfly deeply involved in the community. Christy has been an elected trustee on the board of Oakland Community College for around six years now. Suzanne said that Christy is also very compassionate — an animal lover with four cats and two pit bulls, and someone who wouldn’t hesitate to help anyone.

However, Christy is also the sort of person who doesn’t want to trouble anyone. Admitting that she needs the help of others and reaching out has been a struggle for her. But she knows it will be tough making it to Mexico for treatment without some support. She’s already doing everything she can to slow the disease — juicing, eating organic, staying active and using holistic remedies. She even switched to all-natural, chemical-free forms of toothpaste, deodorant, makeup and more.

Christy has also been taking low-dose naltrexone, a drug originally designed to help drug addicts with cravings, but later discovered to help autoimmune-related issues. It’s cheap and taken in small doses to avoid harming the liver. She said it immediately made a difference, lifting her brain fog so that she felt like a whole new person.

But she says the treatment in Mexico appears to be her best bet for actually halting MS, and she is determined to try it. She’s been talking to other patients online who are currently taking the treatment. The hope is to raise enough money to go to Mexico within the year. And with March being Multiple Sclerosis Awareness Month, she also wants to help others understand the condition.

Suzanne says her daughter puts on a brave face, but is scared in private.

“The trip is a scary endeavor, to be so far away, so young, and to have symptoms like temporary blindness in an eye or numbness in the leg, and each time it could be permanent or take something away,” Suzanne said. “That’s why the clinic (in Mexico) recommends that people with this diagnosis come in right away, before it ravages them. With Christy, it’s just at that stage where the symptoms are starting to appear more often.

“To be in the prime of your life, when you think you’re infallible, and then to be struck with this news is an eye-opener,” she said. “You think stuff like this only happens to other people, but when it happens to someone you know, everyone in the family is shaken.”

But Suzanne said her daughter is incredibly strong and determined to get through this.

“She’s a little thing, with long thick hair and glowing eyes, but she’s a fighter,” Suzanne said. “No matter what it is, she attacks everything that way. That’s her — full of life and full of gusto. Everything she undertakes, she throws herself into it headfirst, 100 percent. She never falters, and I’m so proud of her.” 

To contact Christy or support her treatment, visit her GoFundMe page at www.gofundme.com/hsct2bmsfree. All donations are appreciated.

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