Gemma’s Story – Rare Diseases Day

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OI

 

This week we’re talking about Rare Diseases Day, and of course – it’s our time to shine. This is our time to talk about Brittle Bones to everyone we know/don’t know because that’s the whole point isn’t it? This year for Rare Disease Day I wanted to talk about the contrasting experience of medical treatment from child to adult as someone with Brittle Bones (OI).

When you’re young, tiny and cute everyone is interested in you – people and experts ask you questions and coo at you and your wheels for a bit. And I’m not going to lie – I lapped it up. I used to love hospital appointments/wheelchair appointments because it was a day where I saw specialists who could tell me that I wasn’t on my own with certain health problems and that there were options to make life easier.

 

Educating Experts

 

But as we get older – in fact no – when you turn 18, boom you’re an adult. I noticed that adult services just weren’t the same after this. I ended up teaching the experts about brittle bones and it felt more like a classroom where I was the teacher.

I really noticed a shift when I turned 22 years old. I had a dodgy hip for 6 months, was going back and forth to local hospital appointments. However doctors told me it was ‘just muscle pain’. At the same time my wheelchair broke and I had to resort to a cheap wheelchair on eBay to get around and to work. With these two things going on, my pain and dependence increased and my mental health rapidly decreased.

 

Rare Disease Day’s

 

This is why we need to support days like this, to increase the knowledge of rare diseases so we don’t have to keep pushing for basic treatment and services. It takes a lot of mental energy to keep explaining pain to different people and being the expert on your own health. In an ideal world we shouldn’t have to have a different experience when turning 18. I’d like to see an improvement to adult services for adults with OI because ultimately, we have hobbies to enjoy, jobs to work and lives to live.

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