Living With Sarcoidosis: Public & Private Struggles With the Disease

| August 12, 2017 | Reply

Cr: C. Cuffaro/FOX

Nine years ago this week, the entertainment world unexpectedly lost actor and superstar stand-up comedian Bernard Jeffrey McCullough, better known as Bernie Mac.

A Chicago native and family man who cultivated his stand-up persona in-between jobs, Mac earned national fame in the early 90s with an appearance on HBO’s Def Comedy Jam. The audience that first booed him became instant fans after Bernie uttered his now-famous catchphrase: “I ain’t scared of you [expletives].” Over the years, his talents created roles for him in film and TV, including Mr. 3000, Oceans Thirteen and the Emmy-Award-winning Bernie Mac Show. What it couldn’t do, unfortunately, was free him from sarcoidosis, the disease that contributed to his death.

Discovered in the 1800s, sarcoidosis usually originates in the lungs and is believed to result from a genetic tendency to form granulomas (cell clusters) and abnormal inflammation as an immunity response. What triggers sarcoidosis remains unknown, but the malady affects over a million people across the globe. Although it’s usually manageable, sarcoidosis alters organ function and creates complications thereof.

Despite well-known sufferers like Mac, athlete Reggie White, actress Tisha Campbell and performer Angie Stone sharing their diagnoses, many remain unaware of the disease until they or a loved one develop sarcoidosis. That reality is what Dedra Maginault, an educational administrator-turned-community and health activist, is striving to change.

Discovering her own case of sarcoidosis in 1994, the 51-year-old NJ native admittedly took years to accept her status and readjust her life to minimize its affects.

“I was in denial about what sarcoidosis meant,” Dedra recently shared by phone from her home base of SC. “I wanted to keep working hard and living my life. It felt like a pneumonia that would come and go at first, then I developed an itching and burning sensation in my skin. My eyes were also affected. I thought it was just due to the stress I was under, losing Dad while also being a caregiver for my mom. Little did I know that the stress was what would reveal the disease. I learned that you could be born with it and that sarcoidosis could lay dormant within your body and something in your environment, like an allergen, or stress. I’m the youngest of nine and none of my brothers or sisters have it. I’m the only one.”

According to Maginault, part of what makes sarcoidosis so mysterious is that the diseases manifests itself differently from patient to patient. Most commonly found in the lungs, tests ranging from CT scans and bronchoscopies are where most doctors will start. Steroids may be required for some, while regular over-the-counter aspirins may do the job for others. Whether it’s a chronic condition or a remittent one, sarcoidosis generally affects more women than it does men.

“Come out of denial,” she says to those sharing her struggle. “You can get freaked out when your body changes in ways that you haven’t experienced before. Develop the type of relationship with your doctor where you feel comfortable talking about the changes so they can walk you through what to expect.”

In her own personal journey with sarcoidosis, Maginault shared that, in addition to retiring from education, she also had to learn to ask for help and to avoid toxic people unwilling to accept her slower pace. She’s now in the process of researching sponsorships to fund local support networks for the newly-diagnosed, as well as greater sarcoidosis awareness nationwide. Dedra’s memoir, Sarcoidosis Sanctuary; When Hell Met Heaven, will be released later this year.

“We don’t want pity, just awareness and compassion,” says Maginault. “It’s not going to be easy living with this thing….but that’s okay. Sarcoidosis doesn’t have to mean ‘the end.’”

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Category: DMN Briefing Columns, Health, Beauty & Knowledge

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