Have decided to repost one of my posts on the AIBU threads here:
"I posted on the last thread but have name changed as I am going to talk about a very rare genetic disorder that I also have, which could out me.
To caveat, I am unable to wear a mask due to other conditions but as epidermolysis bullosa is so rare and in some cases could make wearing a mask impossible, this thread seemed a good place to raise some awareness.
Epidermolysis bullosa is a rare condition, affecting around 5,000 people in the UK. About 70% of EB patients have EB Simplex which is the mildest form of the condition, this is what my father, my uncle, my late grandmother and I have/had.
EB causes fragile skin which blisters easily. The different types of EB distinguish between where the blistering occurs, and how deep into the skin it occurs. In more severe cases blistering is also internal - so your throat when eating, your bowels and anus when passing stools etc.
Most of those born with the most severe form of EB will die before their 3rd birthday.
I am incredibly fortunate to have the mildest type as I said before. This means my blistering is localised to mainly my feet (when walking), my hands (if I need to work hard to open a jar or bottle, or if struggling with keys, or during vigorous mixing of cake mix) and my mouth (triggered by sharp foods for example crisps if they scrape my gums or tongue). I also get blistering or sore rubbed skin around clothing seams in hot weather, my bra is a major culprit.
If I ever have surgery, I need the nurses to use special dressings to protect my skin. If I ever have a baby I will need specialist care, and involvement from my EB clinic as the condition is so rare many doctors haven't heard of it, and need support from the EB specialists to manage the care of pregnant women. My baby would be tested at birth. I am prescribed specialist antiseptic creams as bursting my blisters, especially on my feet, poses a risk of infection. I am also prescribed specialist dressings and needles. These are expensive, and so I am not prescribed enough and have to ration them - especially spycra which helps prevent blistering occurring. They are also hard to source and it took a while to find a pharmacy which could source them.
It has occurred to me on these threads that some people with more severe EB could struggle to wear a mask as this could cause their face to blister due to the contact and warmth. Same would apply to the band around their head with a visor.
EB is often referred to as 'the worst condition you've never heard of'. I just thought this might be a good example to show that there are a myriad of unusual conditions out there that could affect people.
You simply do not know what someone else is going through.
Please, please think before you judge.
www.nhs.uk/conditions/epidermolysis-bullosa/symptoms/"