Life With A Rare Disease || Rare Disease Month 2022 [CC]

In the UK, a rare disease is classified as a disease that affects 1 in 2000 people. Cold Urticaria is estimated at 0.05% of the global population (Möller, 1996), which works out as 1 in 3,876,500 people. Visual Snow Syndrome is estimated at 2% of the UK (Kondziella, 2020) which works out as 1 in 1,344,400 people. Hypermobile Ehlers-Danlos Syndrome is estimated between 1 in 5,000 and 1 in 20,000 people.
*Calculations based on population data 25/02/2022
Visual description: Max is sat in front of their wall of pride flags wearing a black t-shirt with rainbow printed BSL hand letters that say genderqueer across two lines. They are wearing a grey wrist splint on their left hand, a fake gold septum ring, glasses with orange lenses, and their hair is split dyed green and black.
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[@sapphirecapricorn]

So far I have one confirmed rare disease, as it was kind of hard NOT to notice my left eye wasn't turning left since I was born lol. I have Duane Syndrome type one in my left eye; I was born without my sixth cranial nerve and thankfully it didn't come paired with the few other issues that can come with it in regards to some fingers and ear development. I suspect at least one other rare congenital issue in regards to weird vein malformations, but have only just started to sorta learn what they can be. I have the "pleasure" of having that, along with a whole laundry list of other chronic health concerns that I haven't been able to get checked out or even taken seriously due to my weight, being afab, and living in American and dealing with their own shitty health system. One day I hope I can finally start a path of getting things dealt with. Hope you have a swell day. Fairly new to the channel, but have enjoyed the vids I"ve watched from ya. c :

[@LaricDuke]

I recently got myself tested at a specialized clinic for my temperature points at which I get the hives. Turns out I don't really get them with dry cold surfaces. There has to be humidity or water or humid wind involved for me to get hives or a rash. But it's also not aquatic urticaria. it's when cold temperature hits water and then me. Also I found out that I have factitia urticaria, which I never knew, because I didn't know it has a name. Now it makes a lot of sense. And I realized that my very close cousin also has a type of urticaria. It's solar urticaria, which is the exact opposite to my situation. When the doctor found out that I have a rare form of the rare disease he wanted me for a test group to test medicine for this type of urticaria. But I declined, because I'm very careful about what I put in my body and I don't want to get rid of my urticaria. It's a part of me. I was born with it. I would feel really uncomfortable if it just went away. Also I want to treat it how I want it to with heated clothes and antihistamines. I also have micro circulatory disorders, so I'd need something against the cold anyway. Btw I don't expect anyone to read this far. Cool if you did though :)

[@Monstaakitty]

I have never seen anyone else who has both EDS & CU aswell. Everytime I am in hospital the doctors are amazed that I have both and say that I am very unlucky 🤣.

[@OuchMouse]

Hahaha yep! I have similar comments 😂

[@hysteric-and-hysterical]

I have visual snow syndrome too!

[@dianajohnson6642]

Wow, watching my hives and inflammation dissolve every day until it all disappeared is definitely appeasing, I went with what I mentioned and after 20 days my urticaria/angioedema disappeared. I just go'ogled the latest by Shane Zormander and now my skin is as smooth and healthy as it has ever been!

[@Chirpingcherub]

I have NF1 (1 in 3000) and a hyper mobility disorder not eds (1 in 1000) though these aren’t super rare NF1 is technically legally classed as rare :)

[@barrytaylorprofoundlydeafi2479]

Hi max 🐁 I had not heard of all 3 of diseases until I decided to follow your channel more! I have not seen many with VSS or CU but lately I have seen more and more people with EDS it used to be very rare! And mostly female under 30! I know your trans max so please forgive me if I get the gender wrong I am trying to say you have EDS in the body you were born with!
I don't know if this video was done after your monthly one as in that you spoke about your left wrist should be in a brace & in this it is! Was that down to your EDS or too much exercise?
I only found out last year I had usher's syndrome type 3 which affects my sight & hearing! Now the ENT consultant thinks the last bit of my hearing loss could be down to menieres disease! So you don't know what to believe!
And what other problem has caused my left arm to be paralysed from the neck to my hand & without a brace my hand closes up in to a fist! Is it a damage disc in my neck or a trapped nerve? Will it finally release itself or will I be stuck with a useless arm & having to do stuff one handed especially when I write with my left hand!
Like you max I just take each day as it comes & the usual questions like what's wrong with my arm? Or why dont I use a long blind cane all the time?
You must get asked why the coloured lenses & once covid has gone why the mask? Thank you for sharing all your chronic illness's,and not forgetting your Deafblind too! 🥰🥰🥰