Raising Awareness for Neurofibromatosis!

Neurofibromatosis is an extremely rare condition. Worldwide it affects just one in four thousand people. Gail Appelgren and Tim Golumbia are two of the individuals living with the illness and they’re using their voice to spread awareness.

Gail and Tim

Gail and Tim are a married couple and they both live with a Type 1 Neurofibromatosis diagnosis. It’s a condition that you’re born with and both of them were diagnosed when they were children. The illness causes bumps across the skin which multiply as the individual ages. For some people these bumps cause nothing except annoyance, for others they cause pain.

Gail herself has had around 40 surgeries to remove some of her painful bumps. Unfortunately, there is no cure for the condition, and the only treatment is surgical removal.

Spreading the Word

Surprisingly, the couple says they like it when people ask them about their condition. They take questions as a chance to educate. For them, they see their own experiences as an opportunity to spread awareness about the disease. With increased awareness they hope to help foster an increase in understanding and a decrease in stigma regarding the condition.

The thing is, because neurofibromatosis is a skin condition, it’s a very visible illness. The couple shares that at times they’ve been thought to be contagious. They’ve even been asked not to swim in a swimming pool or touch fruit at a grocery store for fear of contamination. Even if they’re not negatively addressed, receiving weird looks or being stared at isn’t too pleasant either.

The Message

Remember the old saying- don’t judge a book by its cover? This couple’s story is a good reminder that you never know the intimate details of what a stranger is going through. Treat everyone kindly and with the type of respect you would wish for yourself.

It’s also a reminder for all those living with a rare condition to do your best to have confidence in your own skin.

Gail says, “We have neurofibromatosis but it does not have us.”

The couple is determined to continue being vocal advocates for their condition. The goal is to spread awareness of neurofibromatosis.

You can read more about this couple’s story and neurofibromatosis by clicking here.

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