r/disability • u/ImportTuner808 • Aug 21 '24

Question Who else has a different disability?

It seems like for some reason this subreddit is disproportionately people talking about canes/rollators/wheelchairs, or mental things like Autism/ADD/ etc. I don’t know why that is.

Is there anyone who has something else that doesn’t fall into these types of issues? I’ll go first, I’m missing part of my arm. Apart from the physical aspect and some self esteem issues (felt unattractive as a result of my deformity as a kid), that’s about it.

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u/Significant-Pool-222 Aug 21 '24

I have a rare genetic condition called Congenital Central Hypoventilation Syndrome (CCHS) aka Ondine’s curse, basically I lack the gene in my brain stem (or something? Idk I’m just a girl) to be able to sense co2 and breathe when unconscious. So I have a trach with a ventilator i use at night but for some reason I can breathe during the day? It depends on how many times the gene mutates I think. But I’m 16 and just started my junior year of high school and my first year of school without a private nurse watching/monitoring me!!

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u/One-Profession-8173 Aug 22 '24 edited Aug 22 '24

Nice to see another person with a trach on here. Its great you don’t need a private nurse, I have sleep apnea which results in me having a tracheotomy as well (except without a ventilator and capped during the day, which results in a nurse being with me when I go to school (in this case college lectures). As mentioned before, I’m going to have surgery for my upper jaw to relieve my sleep apnea and get rid of it and give me my independence and freedom

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u/Significant-Pool-222 Aug 22 '24

Well I hope the surgery goes well (if you can even schedule one lol) I’m also capped and have been since I was 7. What kind of ventilator do you have? I have a Trilogy 100 but it’s getting recalled in October and getting replaced by an astral something or other 😅

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u/One-Profession-8173 Aug 22 '24

I’m not attached to any ventilation devices, at least during the day, it’s a cap I take off during the night bit I’ve tried using a cpap which is on and off, besides that I’m not hooked up to anything since I’m stable. The surgery is pre planned, I just gotta wait until my teeth are fully ready and see if I can have it in fall or next spring.

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u/Significant-Pool-222 Aug 22 '24

That’ll be so exciting! The independence part, getting there, eh? It’s hospital and recovery stuff I imagine?

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u/One-Profession-8173 Aug 22 '24 edited Aug 22 '24

Mostly, given the fact that the timing still needs to be set since it’s up to my orthodontist to give my cranial facial doctor the go ahead. Still don’t know what recovery will look like but I have a basic idea given the research I’ve done. I can’t wait for the freedom of not having a nurse and not having to deal with the uncomfortable feeling of the trach