Edmond Man Endures Pain As Doctors Try To Solve Medical Mystery

An Edmond man on a painful journey is searching for answers to his medical mystery.

Brian Allen suddenly came down with a rare disease that causes a terrible rash on his face and dangerous fainting spells. He opened up about his desperate search for a diagnosis.

“It's so intense. I can't wear my glasses. It makes my glasses fog up. The heat is so bad,” Allen said. “Eventually the skin will break and it's just so gross, stuff will just start oozing out and it scabs over.”

The 53-year-old first got an intense rash on his face that would not go away. He had to continually put numbing cream on so he could not feel anything.

“When it's that way, I have to literally sit down and just keep a wash rag on my face the entire time,” Allen told News 9.

The rash lasts six to eight weeks, then disappears for three or four weeks at a time. He is also very sensitive to heat and sunlight.

Allen’s body temperature does not stay regulated, so he could have uncontrollable perspiration even at 72 degrees indoors.

“I wouldn't wish this on anyone, it's so painful,” Allen explained.

When he has the rash, Allen also passes out regularly, sometimes for hours because his blood pressure crashes. He has seen two endocrinologists, two cardiologists, a neurologist, a dermatologist and a regular doctor. They said Allen has adrenal insufficiency, but they have no clue why he is passing out.

  “I try not to get too depressed or too scared about it,” he said. “I've told the doctors this, I can actually understand why people want to check out.”

Doctors all told Allen to go to the Mayo Clinic, which is why he started a fundraising page. Even with insurance, he is already responsible for more than $7,000 in medical bills.

For now, Allen works from home when he needs to, but he is hoping for answers and a sense of normalcy again.

“I hope that they can find out what is going on with me so that other people don't have to go through it,” Allen said.

Allen has an appointment at the Oklahoma Medical Research Foundation next week before his scheduled trip to the Mayo Clinic. He would rather be able to get answers and treatment locally so he does not have to go out-of-state for more testing, treatment and an extended stay away from home.

Learn how you can help Brian.