Retiree refuses to hide thousands of tumours confused for ‘contagious disease’
Meet the retiree who refuses to hide the thousands of tumours all over her body that have been confused for a ‘contagious disease’.
Gail Applegren, 57, from Edmonton in Alberta, Canada, has battled with neurofibromatosis (NF) her whole life but believes the genetic disorder makes her ‘special’ and ‘unique’.
She had one large tumour on her chest and café au lait spots until the age of 12, when the several ‘bumps’ on her body would go onto vastly multiply.
Despite surgeries to remove multiple tumours that can grow to be twice the size of her fist and smaller, they come back in greater number, causing pain and discomfort.
Growing-up bullies would make cruel comments and even into adulthood, people have asked her not to swim in public pools, touch fruit and even fear to flying near her.
But the former-social worker believes she shouldn’t have to cover her skin and proudly shows off her ‘bumps’ to educate others about NF.
Gail said: “I cannot even guess how many bumps I have, they are in the thousands and thousands.
“My entire torso has wall-to-wall bumps. There are so many they are growing on each other or out of each other.
“When I look at my one hand I count 180 from the wrist up but the other has double that number.
“The biggest is on my stomach and others range from the size of my fist of my stomach and one on my back and tail bone that was twice my fist size – to smaller than that.
“I don’t cover up, I wear sleeveless shirts and tops. I’m a regular person, I laugh and cry, like your or anybody else.
“When I look in the mirror, I don’t see neurofibromatosis, I see Gail looking back at me.
“I see my smile and my bright eyes, that’s the way I’ve always been.”
Gail explains about the stigma surrounding the disorder that often leads her and husband Tim Golumbia, 55, a fellow NF warrior, into difficult situations.
She said: “We were on a flight to our vacation destination when the flight attendant came and told me that someone was on the airplane and thought I was contagious.
“They added that my husband must have caught it from me as he did not have as many bumps.
“We were already in the air and the flight attendant said she didn’t know how to deal with this issue.
“So, I gave her a piece of paper with the spelling of condition and recommended she Google and research the condition. I assured her I was not contagious.
“When we were leaving the country, on our way home we were detained at the airport, but no explanation was provided.
“Once, when Tim came with me to a medical appointment, a man moved and said, ‘You are contagious,’ as Tim had some bumps but not as many as I had.
“He laughed and said you are like that commercial on TV where that guy is covered with Skittle candies on his face, also thinking we were contagious.
“A doctor I saw earlier this year, not my regular doctor, told me to just get a skin transplant.”
Gail was diagnosed with neurofibromatosis at the age of 14, a genetic disorder that causes non-cancerous tumours to form on nerve tissue.
Growing-up her most problematic ‘bump’ was a large tumour on her breast that would hang down and grew under her armpit.
Despite numerous surgeries to remove the large mass once a whopping nine inches across and hanging 12 inches down, it continues to grow back – the operations can be life-threatening.
Gail said: “When I had part of the large one removed from my chest, they almost lost me because I lost so much blood, but I was determined and lived on.
“It was so big that they couldn’t get to the root of it, so had to go in for a second time.
“They removed more of the tissue from my chest and some of my ribs, then rebuilt it.”
The smaller tumours continue to grow, despite Gail undergoing operations up to two times a year, where surgeons remove the masses with a scalpel then use stitches and sutures.
While there have been many disappointing moments for her due to others being unaware about neurofibromatosis, she relishes people asking questions.
Gail said: “I love people asking about it, I want to tell them. Seeing me it’s very obvious that I don’t look like a lot of other people.
“I tell them that I have a condition that makes me look different.
“It’s something I’ve dealt with all my life, but I would like to say I’m not contagious.
“I have been asked not to swim in the pool, not to touch fruit at the supermarket, and more.
“When a little boy asked me about my condition, I explained that it makes me special and unique.
“He said, ‘Isn’t there anything they can do for you?’ I shook my head and he replied, ‘You are fine the way you are.’”
Prior to 2010, Gail believed she was ‘too busy’ for love until meeting Tim, now the pair are celebrating their fourth wedding anniversary.
They support the Alberta Tumour Foundation, which aims to support others with NF, through fundraising, research and gatherings.
Despite the pair having to contend with regular pain from the disorder, they try not to let it impact their lives.
Gail said: “I think I’m unique and special because I have a condition a lot of people don’t understand, even some doctors don’t know about it.
“I live every day to the fullest, as I get older the more complications I have with NF but I’m a happy and active person.”
For more information visit: www.abtf.ca
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