scarswithoutastory

To be honest, I was 24 when I learned there was an awareness week about EB, and your sub-type must be even more rare, b/c I haven't heard of Acquisita.

With discovering new types of medical supplies and better antibiotics, I too have been able to manage even my most chronic/painful wounds. Its an everyday process taking care of wounds while trying to prevent new ones.

I am the only person in my family with it, Everyone who knows me, knows I have some sort of skin condition, b/c I have scars everywhere, if you look close enough, you'll notice I don't have finger/toe nails, lashes, and some other EB related marks.

If you're asking about romantic relationships? I am in a long term relationship with someone who is very understanding of my restrictions and I have always been open about it. I have dated others, again being open about it.

as far as friendships, middle school sucked, but as an adult peers were able to look past it more so.

if you're down to chat, you can always pm me.

Id say my partner and I have a normal sex life. There are obvious limitations, like how firmly he is able to grab me. He has to be cautiously aware where my chronic wounds are, like both my underarms and how he grabs me there when he hugs me ect.

Some people with EB have damage on the inside of their esophagus, mouth ect.

For me personally, it does not affect my internal genitals. (Labia and clit)

And I can’t speak for how it does or doesn’t affect men’s genitalia.

Before Covid, I worked in office admin. Having a job that does not require a lot of walking, as my feet are moderately affected.

If you're asking how does it affect others in my family, I am the only one who has it.

If youre asking how did my family deal with it?

My parents had me pretty young, I was the second child and my parents divorced when I was around 6/7 years old.

My dad raised my brother and I on his own, fortunately my dad had a great paying job along with insurance, as he was able to pay out of pocket my medical supplies, and take me to a family doctor when I though I needed to see one.

It was always (and still is) a learning process for my parents and my doctors on how to treat me.

My dad helped my bandage my wounds every night until i was in 5th grade, when I thought I was capable enough to do it on my own.

My wounds would stick to the bed at night, and my dad would come pour warm water to help my un stick as pain free as possible.

My parents dealt with getting the cops called on them on a few occasions for possible child abuse.

i think they did the best they could, with the limited resources the doctor had for us.