Renee’s Story

Hi, I’m Renee. I’m 19.

I love good food, the latest music, shopping and going clubbing with friends.

People should take the trouble to find out what rare disease day is all about because people with rare diseases go through a lot, and they deserve to be treated like everyone else.
The physical reality is, I need help with the most basic things, like brushing my hair. Still, I don’t find it that difficult being this way – I like how I am. Every person with a rare disease should be happy with who they are, because they have been through so much, and kept going. The average person has no idea how much we are going through every day, just to be here.
A few years ago on holiday I got really sick, and found out I was going to need oxygen all the time. It’s expensive – there was no way we could afford it without help. With my condition, being small, my lungs are compressed – without oxygen I wouldn’t be able to do anything. I need it 24/7. Having the cylinder attached to my wheel chair means I can do the things I want to do.
My condition is super rare, I’ve only heard of 2 other people who have it. I haven’t met them.
What I find hard is the way people can treat you. I have to deal with people coming up & asking me straight out ‘What’s wrong with you?’, and I think ‘Are you serious??’. And I could say – I have Geleophysic Dysplasia delete: (dwarfism), which basically stops my bones from growing, and makes it hard to walk, and I’ve had to have 2 open heart surgeries, and had to have a mechanical valve put in…
We just have to remind ourselves, we are equal no matter what.

  1. just wanted to say that people like u are beacons of hope and pilars of strength for others wish u my best and hope your strength reaches others

  2. Great post, I certainly love this site, good luck with it!

  3. Great story! 2 of my kids are on oxygen, and I got so sick of complete strangers asking me “what’s wrong with her” I got a Tshirt saying “Don’t Ask!”. …didn’t work, but it makes me feel better on those days you just want to tell people where to go. (next time I’m getting a REALLY rude singlet top to wear underneath…. Don’t think I’d ever be brave enough to flash it, but you never know!). Thanks for sharing, and good on you!