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I Have a Rare Disease

I was born with a rare medical disorder called Netherton Syndrome. Which is when a child is born with this it could effect skin, hair & the immune system. For me it’s a bit different. I was born with no hair on my head & over the years it grew very very slowly & now I have a tad of curly hair but still not long whatsoever. Netherton Syndrome keeps the hair from growing in a certain place of places. The hair on my head breaks very very easily & my skin is at least 90x’s more sensitive than others. The more serious side of it is when I get hurt, it could take a really really long time for my skin to heal. Anyway there’s some good & bad sides to having N.S. The good out-ways the bad though. The good thing it is that I grew & have a lot of confidence that most people wouldn’t have if they had it ( I’ve been told ). I don’t have to worry about hair in my face or anything like that cause all I gotta do is wash my head. I’m very happy with myself & I don’t see N.S a terrible or bad thing even tho it can be dangerous at times. There’s so many more. The one bad thing that annoys me is the men that stare at me like I have 5 heads & the pick up lines are terrible. I get it from older men for example this guy who works the gas station always hits on me & I find it very time consuming & annoying. If you can say hi normally than you got my attention but, don’t stare for 30 seconds & say something stupid or piggish. Anyway, have N.S could be good & bad & deadly at the same time. But, the I choose not to complain or try to cover it cause it’s a major part of my life & I’m not afraid to walk around being me. And neither should you.
Bluesky52 · 61-69, M
and I say hi,normarlly,a lot of people are so inconsiderate,,,,,just say hi,be nice,they dont know the situation,
Good for you.
I mean that’s really great.
RosieQ · 22-25, F
@DarkHeaven Thanks
Justsomeguy65 · 51-55, M
👍👍👍👍Good for you!
Bluesky52 · 61-69, M
I like your attitude from reading other post's,

 
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