Edmonton couple hopes to raise awareness about their rare disease

Couple educates public about neurofibromitosis An Edmonton couple living with neurofibromitosis wants to make their condition known to the public to dispel any myths or questions. CTV Edmonton's Nahreman Issa has the story.

An Edmonton couple is speaking out in hopes of educating others about a rare skin condition that they both suffer from.

Gail Appelgren and Tim Golumbia were both born with Type 1 Neurofibromatosis. It affects one in three to four thousand people worldwide, and can form mainly benign tumours anywhere in the body.

Appelgren and Golumbia were diagnosed as children and as they got older the bumps began to multiply across their bodies.

“As I aged I got more and more bumps. If you see pics of me from 20 to 30 years ago, I didn’t have as many bumps as I do now,” said Appelgren.

Golumbia says he first started to notice the bumps when he was in his early teens, however they don’t cause him any pain. In his wife’s case, some of her growths do cause some pain and concern.

“I’ve had probably close to 40 surgeries over the year. I have them removed because there is no cure for neurofibromatosis, there is treatment by having surgery to remove them,” said Appelgren.

The disease has more than just a health impact on the pair, it takes a social toll as well.

“People think I am contagious. If I sit down beside someone they’ll take a look and move somewhere else. I’ve been asked not to touch the fruit at a grocery store or don’t swim in the swimming pool.”

They hope that by coming forward with their disease that people will take a moment to understand what they are going through, and to treat them the same as anyone else.

“We have neurofibromatosis but it does not have us,” said Appelgren. “We’re just regular people, come ask us. I love when people ask us what it is. I want to spread awareness of this condition.”

With files from Nahreman Issa