HNPP · Profiles

Profile: Jessica Kellgren-Fozard on living with an ‘invisible disability’

“I received a lot of online hate based on how I am not visibly disabled,” says TV presenter Jessica Kellgren-Fozard. Jessica, 28, from Brighton, UK, is one of the only known people with Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) to be in the public eye.

As the presenter of Latest TV, a Brighton-based TV station and a former contestant on BBC’s Britain’s Top Missing Model, keeping up appearances can be tough, especially with a hidden illness.

“When I was working for a TV station in Brighton I received messages on how I wasn’t disabled enough. And that was it, I decided to put myself out more and talk more about life with invisible disabilities in order to help people like me,” says the model and writer.

“I received a lot of online hate based on how I am not visibly disabled, and supposedly not disabled enough.”

At a young age, Jessica began showing symptoms of HNPP, including extreme palsy in her arms as well as patches of skin being numb, difficulty gripping things, weakness in limbs, as well as fatigue – common symptoms of this inherited condition. “As a child I thought it was normal to not feel the chins in my knees,” she says, after being eventually diagnosed at the age of 17 with the disorder.

She adds: “My reaction was one of relief because I finally had a name for what had been happening to me, and also for why it was happening though my childhood.”

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This is me eight years ago, this is me this year and here are some things you might not know about me… I missed most of my teenage milestones because I was either in hospital or lying in the dark. I was too ill to open my eyes, to sit up or to eat. I missed exams, parties and the friendships I lost. I was made to feel like a burden, like a problem, as if my presence was a hindrance to other people's lives: "how good you are to look after her"… I'm still in the room. But there were some amazing people who stepped in to my lonely space, took my hand and helped me through those rough years. They didn't mind helping out physically or spending time making me laugh and always let me know it was no big deal- I was never a burden to them. That was the best gift they could have given me. That was love. All of this is why I'm so angry when media like #MeBeforeYou comes along! It's a dangerous thing to tell people that the only way you can thank those who have helped you is by removing yourself from their lives! I'm so much better than I was but still need help and I know the best way to repay that help is to live the best life I can; to be brave, to be bright, to be happy! I'm proud of everything I have achieved and where I am now. You can watch my latest vlog for more: Love to everyone still in that place ❤️ #MeBeforeAbleism #LiveBoldly #DisabledandProud #disability #ableism #chronicallyill #beforeandafter #mylifeisworthy #spoonie #disabilityawareness #wheelchair #bestfriend #nowandthen #instagood #instadaily #bichon #deaf #ootdsocialclub #happiness #love #vintage #retro #pinupgirl #glamour #iger #youtuber #celebratedontdiscriminate #chronicallyfabulous

A post shared by Jessica Kellgren-Fozard (@jessicaoutofthecloset) on

The condition affects one or more of the peripheral nerves, which connect the brain and spinal cord to the muscles and to the sensory cells that detect touch, pain and temperature. One copy of the gene PMP22 is lost, causing the protective outer layer of each nerve (myelin) to become fragile and more susceptible to injury.

On top of having HNPP, Jessica battles with Mixed Connective Tissue Disorder (MCTD), an autoimmune disease in which the body’s defence system attacks itself. MCTD causes chronic joint pain, muscle inflammation, hypermobility, pulmonary hypertension alongside a huge list of other symptoms.

And owing to weak connective tissue and damage to the nerves, Jessica is also deaf. Hence, fighting these conditions while attempting to live a relatively steady life poses its own issues.

“I avoid sitting, standing or laying on the same position for too long,” she says.

After recovering from a long bout of illness, the then 19-year-old Jessica applied to an advert looking for people to take part in a BBC TV show about people with disabilities, specifically focusing on young women who were interested in fashion. “It ended up being a six part series about disabled girls becoming models.”

The show, Britain’s Top Missing Model, featured an array of young hopefuls with various disabilities from across the globe. Sadly, Jessica received a torrent of online abuse for her invisible illness. She says: “Afterwards I received a lot of online hate based on how I am not visibly disabled, and supposedly not disabled enough.”

Watch more here.

The stigma surrounding hidden illnesses spurred Jessica on to continue keeping up a public profile so that others can speak out about their own experiences about invisible disabilities.

“I did struggle in school and university, because I felt they weren’t prepared even if they were willing to help. There was just not enough funding or education on how to properly help students with a disability.”

Thankfully, Jessica is backed by her loving wife, Claudia, her two adorable dogs, as well as her parents who have been an important part of her support network. “My wife lovely rolls me through the night,” says Jessica, who married her partner last year.

Managing the condition is critical to how Jessica functions, as she recommends listening to your body for the correct answers. She asserts: “[Your body will] tell you when you rest and when to go for it and do all those things you want to do. Don’t overwork yourself, that’s very important. I also take a lot of prescribed medication, so talk to your doctor if you are doing to pain daily.”

So what next for the feisty fashionista? Jessica says she plans to continue spreading the word: “I am going to carry on with my YouTube channel and my writing. Just generally be there and support and inspiration for people going through something and need someone to look up to.”

Find out more about Jessica’s journey at Jessica Out Of The Closet.

Follow Jessica’s YouTube channel here: Jessica Kellgren-Fozard.

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