Anchorage woman using pageant to spread awareness for invisible illness

ANCHORAGE, Alaska (KTUU) - An Anchorage woman is competing in the Mrs. Alaska America pageant in May, and she is using her platform to spread awareness for her invisible, underdiagnosed illness.

Dawn Michel has had Ehlers Danlos Syndrome (EDS) her whole life, but was only diagnosed decades into her life.

“It doesn’t stop,” Michel said. “And that’s been a struggle — the body just trying to tear you down.”

EDS is characterized by pain, stretchy skin and hypermobility, which is also described as being double jointed. The syndrome also comes with many other debilitating signs and symptoms that impact all parts of the body.

“EDS affects literally almost every part of me at this point,” Michel said.

Michel also has other illnesses that often come with EDS. Michel was diagnosed with EDS about seven or eight years ago.

It takes many patients years to get diagnosed. Michel said having a name to the illness has helped her.

“It’s a process, but being diagnosed has helped me to be able to explain to my family the signs, the symptoms, and this was not in my head, there’s something wrong here,” Michel said.

Michel said that at first, she didn’t want EDS to be her pageant platform.

“I’m 48 and living with EDS. It doesn’t go away,” Michel said. “So, I was thinking, of everything else that I could do, that could be my platform.”

One of her doctors sponsored her for the pageant and reminded her that May is EDS Awareness Month, and that’s when the pageant is being held.

“And it just made sense. Honestly, as much as I fought it. That’s, that’s who I am. And we need awareness. We need people to understand,” Michel said.

During the pageant, Michel will have to rely on her cane to move around the stage. She said it was a hard decision for her to make.

“I do not always need a cane,” Michel said while holding back tears. “But I’m gonna be on my feet all day. I know that I need it and I can’t be stubborn.”

Michel said that using a cane to bring attention to her illness, which many can’t see, is a scary thought.

“I try to be very independent, so using a cane is losing some of my independence, but I’m stronger than that,” Michel said.

The cane gives Michel stability, but it symbolizes much more.

“It is an invisible disability, and the cane that I chose is clear,” Michel said.

Before she gets up on the stage, Michel is going through another process to make her more comfortable.

“There’s steroid injections to help hopefully ease the pain that I’m having in my low back,” Michel said.

To Michel, EDS is strength.

“Which, is backwards because at every moment of our life EDS is trying to tear us apart, but it takes strength to keep going,” Michel said.

For Michel, the crown isn’t the ultimate prize — it’s getting the word out with the hope of helping others.

“Win or lose, I’m still gonna win at this,” Michel said.

The Mrs. Alaska America pageant is Saturday, May 14 in the Bettye Davis East High School auditorium.

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