You have sclero-what?

A young person’s story of scleroderma

Meet Mabel. She’s 13 and has scleroderma, a chronic condition that affects the body’s connective tissue. She shares her story with us here.

How old where you when you were diagnosed with scleroderma?
I was 6, nearly 7 years old when I was diagnosed, and now I’m 13, so I just realised that is half of my lifetime ago!

Scleroderma’s a mouthful! Did it take you long to learn how to say it?
I knew how to say it but I didn’t really understand what it was at first. My little sisters, who were 3 at the time could also say it!

Can you remember how you felt when you were told you had scleroderma?
I was surprised, but at the time it really didn’t feel like that much. Now as a 13 year old, I can see how dangerous and scary it was.

What is the worst thing about having scleroderma?
All the medicine and appointments, because it meant that I missed a lot of school. I didn’t get to go to school as much.

Are there any good things about having scleroderma, or any ‘silver linings’?
The silver linings are that I’m not afraid of needles because I’ve had so many. When my friends and I have to have immunisations at school or a flu shot I’m not scared or worried.

You also meet a lot of kind, random people; people that you’ve never met before who give you gifts and are really nice.

What is one thing you wish someone had said to you, or wish you knew about scleroderma when you were first diagnosed?
That you don’t need to be afraid, as there are doctors and nurses who will be kind and help you, and other kind people who want to help you.

What would you say to someone else who has just been diagnosed with scleroderma?
I would tell them that all the needles are worth it, because they are going to make you healthy and your condition hopefully won’t get worse.

Take the medicine, even if you don’t know if it is going to help, your medicine will give you a better chance of improving.

What do you wish everyone else (teachers, friends, family, the big wide world) knew about scleroderma?
I wish more people knew what scleroderma is, rather than saying “what’s that?” when they either ask about my hands and arms, and I tell them it’s scleroderma and then they have no idea what scleroderma is.

Anything else you’d like to add?
Just because you have a medical condition doesn’t mean you are different, it means you have a different ability.

Appearances don’t matter because the outside is different to the inside.

If you’d like to share your story like Mabel did, about what it’s like to live with a juvenile form of musculoskeletal condition (e.g. arthritis, back pain, Perthes, fibromyalgia), contact us here!