Arvada woman with extremely rare disease has developed equally rare complications

ARVADA, Colo. – Kelly Conley knows firsthand how quickly life can turn upside down.

“I was totally healthy and normal two and a half years ago and then I woke up with this sudden onset of this really rare disease,” she told FOX31.

The disease is called Cogan’s Syndrome and is an autoimmune disorder that affects a person’s eyes and ears.

“Less than 200 people have ever had it,” Conley said.

She says it destroyed her ability to balance. She suffered a 10-day stretch of vertigo when she was first diagnosed.

“I had rolling vertigo that wouldn’t stop. Every time I moved, the world just kept moving and I couldn’t get my bearings,” she said.

It also attacked her inner ears. She began experiencing hearing loss and had to use hearing aids for the first four months.

“Woke up one morning and just the hearing is completely gone. So, I can’t hear anything,” she said.

Conley communicates using a voice-to-text app on her cell phone.

“It’s lonely,” Conleysaid. “I miss my kids’ voices.”

She is losing her vision, too.

“I also started getting inflammation in my eyes and the steroid treatment for that damaged the cataracts and I had cataract surgery this past summer,” Conley said.

Between losing her balance, her hearing and deteriorating vision, Conley had to quit the full-time job she been offered just three days before coming down with Cogan’s.

To make ends meet, her husband Aaron, who is a philosophy professor at Regis University, had to take on a second full-time job. They purchased a motorcycle shop where Aaron is a mechanic on the days he doesn’t have to teach.

The couple has two sons -- ages 12 and 8 -- to care for, too. They lost their third child two weeks before birth in February 2017.

“I think finances are just a huge stress anyway when things are going well,” Kelly said.

And their financial situation has only continued to stretch.

“And then I ended up in the emergency room on New Year’s Eve and was hospitalized four days because of this really rare complication of this really rare disease,” she said.

Her Cogan’s has caused vasculitis, which can be fatal if left untreated.

“Now it’s in my aorta. It’s in my eyes. It’s in my optic nerve. So it just keeps getting harder,” she said.

The disease and complications are so rare, she says doctors aren’t sure how to treat it.

“There is a specialist in California that is working with stem cells. And so they harvest stem cells from your body and put them back in your system. There is hope that it can reverse the damage. It can at least stop the damage,” she said.

The problem is, the low-risk experimental treatment is extremely expensive. The Conleys need $20,000 plus travel expenses to pursue it.

Their friends have started a GoFundMe account to help Kelly pay for the cost of the treatment, travel and making ends meet.

AlertMe