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Celebrity

What It's Really Like ... to Live with Morgellons Disease

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Courtesy of Cindy Casey Holman

According to a press release from the Charles E. Holman Foundation for Morgellons Disease, Morgellons is a multi-system infectious disease that presents itself in the form of severe fatigue, forgetfulness, memory loss and fibers in the skin that cause lesions.

Famed singer and songwriter Joni Mitchell, who is currently in the hospital, has stated in the past that she has struggled with the disease. “I have this weird, incurable disease that seems like it’s from outer space,” she told the Los Angeles Times. “Fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: They cannot be forensically identified as animal, vegetable or mineral.” The disease has long confused the medical community.

Her health scare has thrust Morgellons disease back into the spotlight. PEOPLE spoke with Cindy Casey-Holman, who’s lived with Morgellons for over a decade and currently serves as the executive director of the Charles E. Holman Foundation, about what it s really like to live with this disease. Here, she describes her own battle.

It starts like a bug bite.

Just a patch of itchy, red, raised skin, looking much like a mosquito bite would. But then more start to spring up, and before you know it, your skin is covered in lesions. They’re painful – and they just keep getting worse and worse.

On top of that, there’s endless fatigue and increased forgetfulness and memory loss. I could sleep for 16 hours and still wake up exhausted. My husband started noticing that when he would ask me a question, I’d take a long time to answer. It felt like my brain wasn’t working.

These are the symptoms that characterize Morgellons, a disease I’ve been suffering from for over a decade. But perhaps even more frustrating than dealing with these ailments is the fact that Morgellons is still not recognized in many medical communities. In my journey to diagnosis and treatment, I’ve encountered countless doctors who smirked and rolled their eyes at me. Some even tried to diagnose me as delusional.

The Charles E. Holman Foundation for Morgellons Disease’s annual conference
Courtesy of Cindy Casey Holman

Morgellons has long confused the medical community. When I first started exhibiting symptoms in the mid-’90s, I had no idea what it was, either. Lesions had been popping up all over my legs in smaller numbers. But it wasn’t until 2003 that they broke out all over my body. I was miserable, so I decided to seek out medical care.

It seemed like a skin condition, so I went to a dermatologist. The first didn’t offer me any help. Neither did the second, or the third. After the sixth dermatologist sort of rolled their eyes at me, I began to wonder, “What is going on here?”

And the crazy thing is, I’m a medical professional. I’ve been a nurse my whole life. It was hard not getting a diagnosis, and beyond that, just not really knowing.

Clues and Clarity

Because of the doctors’ refusal to diagnose me, I had no idea what I was suffering from. But one day, a friend called me and told me she might have found the answer. “Watch the news tonight,” she told me. “There’s a story about a condition called Morgellons, and it looks exactly like what you have.”

I watched the news special, and in it, they recommended using a microscope on the lesions to view the fibers, which is the quality that’s most indicative of a case of Morgellons.

That day, my husband went and got a handheld microscope, and we went and looked. Sure enough, there were fibers all embedded into my skin. It wasn’t just on the lesions – there were webs of fibers all over my skin, even in the unbroken areas.

A common misconception when it comes to Morgellons is that these fibers are of a textile nature. Thanks to a greater level of scientific research on the disease, we know now that these fibers are made of collagen and keratin, and our own bodies produce them.

Finally Getting a Diagnosis

Crazily enough, even with this knowledge, I still couldn’t get a diagnosis. I had seen the fibers, and I knew what Morgellons was, but nothing. Nothing, that is, until I found a Lyme disease specialist in Texas in 2004. That’s when I got both a Lyme disease and a Morgellons diagnosis.

Lyme disease and Morgellons are connected, although we still don’t know exactly what this connection is. But Lyme disease really brought Morgellons to life because it was Lyme disease specialists that kept seeing it in their patients. Oftentimes, the same bacteria that causes Lyme disease, Borrelia, is present in Morgellons patients, too.

With Morgellons, the frustration isn’t just due to a lack of a diagnosis but the inaccurate diagnoses that people try to give you. For me, the most difficult to deal with was when doctors would tell me that I was delusional. I had a full neuro-psych evaluation, and they tried to put me on an anti-psychotic, which I declined.

I was really distraught throughout the whole experience, but my husband kept saying, “We can fight this. This is so wrong.” He knew we could make a difference.

Raising Awareness

So that’s when we started the foundation, now called the Charles E. Holman Foundation for Morgellons Disease in honor of my husband, who passed away in 2007. Almost immediately after I received my diagnosis, my husband transformed what was once our wedding website into the foundation’s website. We received nonprofit status in 2006.

Our goal is to raise awareness about Morgellons and also to find out more about this disease. The research we’ve done and the science we’ve found through the foundation is a huge part of my story. Now there have been a number of articles published about Morgellons, which offer scientific proof to discredit negative rumors about the disease.

Joni Mitchell
Getty

Joni Mitchell, who is probably the highest-profile sufferer of Morgellons, may be a celebrity, but she isn’t exempt from the judgment that those with this disease face.

Mitchell reached out to the foundation back in 2008, and from early on, she told me two things: Never read your reviews, and the media is not our friend. And she would know. She’s dealt with criticism for this all her life. It’s criticism that I know well, too.

Thankfully, I’m much better now. I have a great dermatologist here in Austin, Dr. Jason Reichenberg, who takes the Morgellons debate seriously. In fact, he’s the author of the only medical textbook chapter on Morgellons in existence. It took me nine years to find a dermatologist who would take this seriously.

There are hardly any lesions on my body anymore – just a few small spots on my legs, back and arms. What’s really helped me is long-term antibiotics. It took over a year for them to truly be effective, but eventually, they started working. They gave me back my quality of life.