Kelly’s Story

Hi, my name’s Kelly, I’m 40 years old and I’m from Stoke-on-Trent. Just thought I’d introduce myself! I’m a caring, kind person and I do a lot for others. I love spending time with my family and my dog, Bailey. I’ve got two sisters, one brother, and five nephews. All my nephews know I’ve got Neurofibromatosis (NF), and my youngest always says, "Kelly’s got a poorly leg and hip, she has NF." It’s so sweet that they understand, as I’ve chatted with them all about it.

I’ve also got four best friends, and one of them has NF too. My friends Michelle, Charlotte, Hayley, and Gaynor are the kindest people you could meet. They’re always there for me, which was hard at first because I’ve been through a lot, and found it tough to trust people.

Here’s my story. I was born in 1984 and back then, I was a normal baby. I had to be in an incubator for a few days because I wasn’t breathing properly, but I came home after about a week. When I was three and trying to walk I kept falling over. The doctor just told my mum and dad that I’d get there eventually. Then when my mum was in hospital in 1987 having my brother, a doctor came up to her and said  "Oh, you’ve got Neurofibromatosis." My mum had never heard of it and said "I’ve got what?" She didn’t even know she had it! All she had were a few brown patches, but I had them too, so they said I had NF as well.

Bailey, my rock

Even though I kept falling over, my dad demanded that I be seen by an orthopaedic doctor. Eventually they found out that one of my legs was shorter than the other, so I had to wear Pietro boots. One boot was bigger than the other to help me walk.

When I went to primary school I was picked on a lot because of my boots. They called me "peg leg," and one person bullied me every single day. I didn’t want to go to school, but I had a lovely teacher who always looked after me. At 11, I had an operation on one of my legs to take the growth plate away so the other leg could catch up.

Then when I got to high school, the bullying started again. This time, it was from the older kids. They picked on me because I couldn’t do sports properly because of my legs. I got called names every day, and at one point, five people beat me up. This went on for years until one day I couldn’t take it anymore. I told my dad that if I went back to school he wouldn’t see me again. So I left school when I was 15, and never got to take my GCSEs.

This really affected my life. I always asked "Why me? Why do I have this condition? Why am I not pretty?" I was scared of having a boyfriend. My mum and dad always told me I was beautiful, inside and out.

Time went on and I went to college. I was nervous, thinking, "Am I going to get bullied again?" I stayed there for about eight months, but I couldn’t shake that fear so I left. Then when I was 18, my mum got me my first job. Things were going alright, but in 2007, I had a lump in my groin. It was to do with NF, and I had to have it removed. It was painful and took me a while to get back on my feet.

After that my leg started to swell up, and the doctors thought it was lymphedema, so I was being treated for that. One day I Googled NF and found a place in Birmingham. I got in touch with Carolyn Smyth who came to examine me, she told me I had a plexiform Neurofibroma and had been incorrectly diagnosed with Lymphoedema. I then saw Dr.Ealing at the genetic clinic in Manchester and he confirmed what Carolyn had said "You don't have lymphedema, you've got plexiform neurofibromas" I was like "I've got what what?!" He explained it to me and I was in shock.

I had an operation in 2015, and although it went well, I panicked when I saw the size of the scar. I was already scared to show my leg because of all the bullying I’d been through. People kept telling me not to worry about what others think, so I thought "Alright, I’ll wear a summer dress." But that turned out to be the worst decision. People stared and asked what was wrong with my leg, and it upset me so much that I stopped wearing dresses.

This affected my relationships too. I didn’t want anyone to see my leg or know about NF because I’d had bad experiences in past relationships. Then, in 2020, I had to have another operation on the same leg. I was so scared and cried, thinking, "What’s my leg going to look like now?" My anxiety flared up, which I’ve struggled with on and off since I was young.

In 2021, I dislocated my left hip and it went through my pelvis. The pain was awful—I was screaming the hospital down! They had to put me to sleep to get the hip back into place. Now, I have to be really careful because it could pop out again. I can’t run or go to the gym, but I can swim, although I get a lot of pain in my hip. The NF tissue around my hip causes a lot of pain too, but I just have to get on with it.

In 2022, I found out I couldn’t have children because of my pelvis, so I had a hysterectomy. That was really hard to accept. It took me a while to come to terms with it, and I had therapy which helped. That’s when I decided to rescue a deaf dog named Bailey. He’s the best thing that’s ever happened to me, and I even use sign language with him.

The last operation I had was in 2023 on my left breast because I had a plexiform there too. It’s much better now. I’ve decided I don’t want to be in a relationship anymore. I don’t want to have to explain my scars or go through the pain of being put down again. I’ve had bad experiences in the past, so I’m happy on my own with my dog. I live with my mum, and we get on so well.

This is my story, and I hope it helps someone out there. My big step now is not worrying about what other people think—you are who you are! I’ve got so much more confidence now, and that’s all thanks to my best friend Michelle. I’ve only known her for just over a year, but she’s helped me so much. Charlotte also helped me through a tough time a few years ago, and we’ve stayed friends ever since. I love my best friends, and next year I’m going on my first holiday abroad. I’m even going to wear a bikini for the first time ever!