By Danny Baggott @dan_baggie
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Videographer / director: Ryan Jackson
Producer: Danny Baggott, Ruby Coote
Editor: Beth Angus
58-year-old Gail Appelgren inherited a severe form of Neurofibromatosis (NF) from her mother at birth.
Causing tumours to form on nerve tissue, they can develop anywhere in the nervous system, including on the brain and spinal cord – often making the condition life-threatening.
Since she was first diagnosed at 12 years old, Gail, who lives in Edmonton, Canada, has received more than 40 surgeries to try and correct the thousands of tumours on her body and counter the skin cancer that has formed as a result.
Over the years, Gail has been accused of being contagious and has been banned from public swimming pools because of the way she looks – however, her luck began to change in August 2010 when she met her now husband, Tim Golumbia, a fellow sufferer of the condition.
Tim, 55, was born with a more mild form of NF, but understands more than most what it’s like to live with such a visual, and different, appearance.
And after just a string of dates, the happy couple found great comfort in one and other and haven’t looked back since.
Gail told Barcroft TV: “We always like to say that we have NF, but it doesn’t have us.
“Finding Tim was very comforting for me, because we could share a lot of the same experiences that come with living with Neurofibromatosis.
“I’m so proud of what we have both achieved, together. We complement each other in so many ways.”
Tim added: “Gail is my whole world, we just love to do things together.
“I am so proud of her. She’s carried on that genuine, caring side and compassion she has for people in working on what we’re doing now – trying to educate people about NF.
“So many people don’t understand the condition and it’s very upsetting when people don’t take any time to understand, either.”
Neurofibromatosis affects one in every 3,000 people and, as the tumours can start to grow on internal organs, a full diagnosis is often not provided until people reach their 20s.
As Gail and two of her sisters inherited the condition from their mother, it was passed to them genetically.
However, neither of Tim’s parents suffered with NF and so he is what is known as a ‘mutation’.
Gail said: “Neurofibromatosis can be a very difficult word to say and it’s also a very difficult condition to live with.
“As you can see, I have many, many tumours on my body that started appearing when I was 12.
“Unfortunately, there’s no cure for NF – it’s only ever surgical treatments.
“I’ve had around 40 surgeries in my life and last year alone I had five or six.
“The hardest part for me is the pain that comes with the condition. People have lost limbs and died as a result of it.”
Tim continued: “I started to notice differences in my body with early puberty in grade two, grade three.
“I had a good few friends in school, but it was very difficult because of the bullying.”
Tim’s tumours began to show early as a child and so he experienced a harder time growing up with people picking flaws in his appearance.
But as the two of them surpassed their teen years, it was Gail’s NF that started to become more severe, with thousands of tumours taking over her body.
And as a result, Gail has experienced a large degree of discrimination in her adult life when out and about in public.
"I receive a lot of stares when I’m out in public or wherever I happen to be,” Gail said.
“I realise I don’t look like everybody else.
“Thankfully, I don’t get anxious anymore when I go out. But I do have a few terrible stories to tell.
“One time in a coffee line-up, this lady approached me and said, ‘I’m a nurse and I know exactly what you have. Just so you know, when you die and get in front of God, you’ll be beautiful. You won’t have any bumps at all.’
“And I said, ‘Well I think I’m beautiful right now’ and she just shook her head and said, ‘No, no you’re not’ and walked away.
“I’ve been asked not to swim in swimming pools or if I sit down besides somebody, they’ll often get up and move. I’ve had people surround me and pray for me.
“I just want to tell so many people that Neurofibromatosis is not contagious.”
It was nine years ago when Gail’s life took a turn for the better after she met Tim through a mutual friend at work.
Gail said: “My colleague was like, ‘Gail, there’s this man and he’s got the same thing you do. He’s about your age, and you got to phone him’.
“I called him on a Sunday night and we talked for about an hour and found out that we had so much in common – as well as our condition of course.
“We spoke every day from that point on and Tim sent me flowers.”
Tim said: “I think we pretty much knew that we were meant to be together at that point.
“I proposed not too long after and she said yes.”
The happy couple got married in 2014 with their closest friends and family by their side.
Both Gail and Tim are very grateful for the support their loved ones have offered over the years.
Gail’s sister, Linda Morgan, said: “When I first found out that Gail and Tim were dating I thought that’s so great – it’s meant to be!
“Tim’s lovely and Gail has always deserved someone lovely.
“I hope the future holds many years of happiness for them.”
Gail and Tim are both active members of the Neurofibromatosis awareness groups online and want to continue to spread the message of ‘just ask’.
Gail said: “We’re doing so much to raise awareness of NF and support individuals and families that live with it.
“I’m sure the future holds the most wonderful of things for both of us.”