An ‘Unstoppable Warrior’ Steps Out to Shed Light on Sarcoidosis

April 18, 2018 6:00 AM

Diagnosed with a damaging inflammatory disease, one woman has worked hard to reclaim her life. Now, with a support group and charity walk, she’s making strides.

At age 27, Sheron Williams found herself in the emergency department at Michigan Medicine after having trouble speaking, swallowing and eating.

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Pain and overall discomfort weren’t new to Williams, who had experienced exhaustion and skin rashes on her legs.

But her inability to eat and her taste being completely altered were new and scary developments.

“I went from a size 8 or 10 to a size 2,” Williams says. “Food just didn’t taste right, and I didn’t like my favorite foods anymore. I couldn’t eat and I couldn’t swallow, and when I arrived at the emergency department I remember them thinking I was underage because I was so tiny.”

After 24 hours of testing and monitoring, doctors revealed a diagnosis: Williams had sarcoidosis. It’s a disease where inflammatory cells form lumps throughout the body mainly affecting the lungs, eyes, skin and, in rare cases, the heart.

“I was in the hospital for a month and was still sick for years to come, but I was able to get my sarcoidosis back in remission,” says Williams, now 53, who managed her condition with the help of steroids — and despite physical setbacks, has prevailed as a warrior and advocate.

Staying positive through struggle

Initial relief didn’t last. Ten years ago, Williams began struggling to breathe. Walking up one flight of stairs to her apartment felt like someone was holding her neck and restricting oxygen.

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“When I went back to the University of Michigan they said that it (sarcoidosis) had suddenly began attacking my liver and they started treating me again right away,” Williams says. “I had to be put on oxygen, up my medications and have infusions three times a week. After three months, it went down to just a couple of times a week until I could be eventually weaned off of them.”

Although sarcoidosis has attacked almost every part of her body, including her skin, liver, eyes, throat, saliva glands, nervous system and brain, Williams refuses to let the disease define her.

“Through all of that, I have tried to stay positive,” Williams says. “I have my moments, but now I have more encouraging moments than pity moments. In fact, when I met Dr. Eric White at U-M, I told him all of us are leaving this world one day, but your job is to make sure my death certificate doesn’t say ‘death by sarcoidosis!’”

She also made sure to ask White, a professor of pulmonary disease at Michigan Medicine, about how to move forward with her life.

“Some people can’t get past what they can no longer do instead of concentrating on what they can do,” Williams says. “Sports players know their opponent, so I have to know sarcoidosis.”

Speaking up for others

Determined to stay informed and positive, Williams sought out support groups for her disease.

“When people are sick, I don’t think it depends on what disease or sickness ailment you have, it depends on your frame of mind,” she says. “It’s important to have empathy for those who are sick because it can happen to you. I remember telling myself ‘You’re unstoppable and you’re going to live, but being sick is a full-time job.’”

After starting her own support group focused on education — the Michigan Unstoppable Warriors Sarcoidosis Group — she was contacted by the Foundation for Sarcoidosis Research about becoming a patient ambassador.

“I was floored and honored,” Williams says. “Last year, I went to my first congressional briefing in Washington, D.C., and that made me want to advocate even more.”

During the trip, she learned that other ambassadors had worked with legislators in their respective home states to introduce proclamations recognizing the disease.

Williams, no surprise, wasted no time doing the same. “I came home and started lobbying and meeting with different state representatives,” she says. “State Sen. David Knezek listened to me and asked for information on what the other states did.”

Over a period of two weeks, Williams wrote to 109 state house representatives, 28 state senators, the governor and lieutenant governor to let them know about Knezek’s forthcoming bill and to ask for their support.

Her efforts paid off: Senate Bill No. 783 allows for April to be recognized as Sarcoidosis Awareness Month in Michigan each year.

She considers the declaration to be far more than a formality.

“I see getting recognized by the state as one step closer to having people understand our disease, getting better insurance coverage for drugs for our disease because of the increased understanding, and for people to see how it affects those with it,” Williams says. “I’m not here to go toe-to-toe with another disease.

“We all deserve recognition for what we are going through and I want our voice to be heard, too.”

Sheron Williams and the state Senate bill recognizing April as Sarcoidosis Awareness Month in Michigan.

Walking toward the future

Always looking to move the needle on awareness about the disease, Williams and her support group have no plans to slow down.

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Their latest effort: a fundraising walk held at Michigan Medicine’s medical campus.

The Michigan Unstoppable Warriors Sarcoid Walk will take place Saturday, April 21, at 10 a.m. at Michigan Medicine’s Hospital Courtyard. Those interested in attending or walking can register and donate online.

Because their T-shirt may not arrive in time, Williams encourages everyone to wear purple to show their support. (Online registration will close April 19; walkers may still register at the event).

The walk marks another step in Williams’ long journey as a patient and advocate.

“This disease has been around for years and years and people still don’t know about it,” Williams says. “But our ‘Unstoppable Warriors’ are working to change that.”