1,000s of lumps…
When I was growing up, my dad Peter didn’t talk about the lumps covering his face and body. He was a shy, private man. But I didn’t care what he looked like – he was my daddy and I loved him.
Still, it meant when I was diagnosed, aged 9, with the same genetic condition – neurofibromatosis type 1 or NF1 – I didn’t really understand.
But I don’t have lumps like Daddy, I thought.
Only, when I was 14, the first ones popped up on my skin. I panicked. My parents took me to the GP. I listened, distraught as the doctor explained the symptoms of NF1 often didn’t develop until adolescence.
As I got older, the condition would cause soft, non-cancerous bumps to grow on or under my skin.
‘We’re not sure how serious your case will be,’ the doctor said. We’d have to wait and see. I hoped I’d have a mild case. But as puberty hit, more bumps grew.
Dad still didn’t talk about it – I think he felt guilty and it hurt him to look at me. More lumps continued to appear on my arms, tummy, all over my back. And my face. Devastating for a teenage girl.
People would stare and point when I went out.
Paranoid about my looks, I became a shy, insecure teen. I had an unrelated hearing impairment, too, which didn’t help my self-confidence. I had almost zero love life. Who’d want me? I’d think, self-esteem at rock bottom.
Until, in 2003, aged 27, I met Mike, then 32.
We’d briefly met previously, so he knew about my condition.
He was one of the first people outside my family to treat me like a human and look beyond the lumps covering my body. ‘I love you for you,’ Mike said. I knew then that I’d finally met the right man for me.
I already had James, then 2, from a previous relationship. Mike had Chloe, then 7.
We moved in together, but I still lived in fear of comments in the street. Ignorant strangers who thought it was acceptable to be rude.
‘Spotty bitch!’ someone once shouted.
Once, on holiday, a couple told me I looked like I’d been bitten by a crocodile.
I’d hold it together until I got home, then fall apart.
Determined to learn more about NF1, I saw specialists, did Internet research.
‘I could have laser treatment,’ I told Mike. ‘Specialists could remove some of the smaller lumps.’
‘Go for it if it’ll make you happy,’ Mike said.
So, in 2004, I had lumps zapped from the top of my back, chest, and a few off my face. It gave me a massive boost. I was determined to help Dad, too.
‘Treatment really helped me,’ I told him.
Eventually, I convinced him to try laser surgery, too, and it
People would stare and point when I went out
did improve his condition.
Mike and I had Siobhan in February 2006, then Logan in April 2011.
But with every pregnancy, all the hormones flooding my body caused my condition to worsen. More lumps appeared. I hid away, wore long sleeves to hide my body if I had to go out at all. I struggled to talk to people. But it was impossible to hide my face, and make-up did little to cover the bumps.
Sadly, Dad, 62, passed away of a heart attack in 2012.
I wished he’d sought help earlier in life, but it made me determined to connect with other sufferers.
In April 2013, Mike and I got married.
I worried about people watching me walk down the aisle, having my photo taken.
‘If you like, I can Photoshop the bumps out,’ our lovely photographer offered. ‘Yes please!’ I gasped. I had a wonderful make-up artist, too, and a gorgeous flowing gown.
‘You look beautiful,’ Mike beamed.
And looking at the photos, I couldn’t believe my eyes – they were perfect memories.
In 2014, I had more laser treatment. And I started a Facebook group, Neurofibromatosis Our World. Through it, I connected with hundreds of other sufferers.
They’re a support network for the dark days.
I fear my condition is worsening with age, and I may have more laser treatment.
The condition is genetic, and I’m concerned the kids may have inherited it. It’s why I’m telling my story. I want to show my kids to be proud of who they are.
And people to know they should ask questions, not snigger and point.
I still have tough days.
What will people think? I worry if we’re going out. But Mike, 46, is my rock. I’ve never needed to hide from him.
Chloe, 21, James, 16, Siobhan, 11, and Logan, 6, too. They’re protective. ‘If anyone says anything, I give them a look,’ Siobhan says. And I know I’m loved. Lumps, bumps and all.
My condition is getting worse... but Mike is my rock