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I feel like a poser!

Forum: Skin Disorders


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June 18th, 2007, 12:35 AM
LadyTkachenko's Avatar *~GreenTeamFeb2015~*
Join Date: Jan 2006
Location: WA
Posts: 13,615
My girls have a really mild type of EB so when I try going to any EB forums or groups I feel like such a poser. Like someone complaining of a headache in the middle of the cancer ward.
Mom to: Malachi 15, Trinity 10, Anastasiya 7, Nathan 5

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June 18th, 2007, 10:39 AM
glasscandie's Avatar What I make is what I am
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I sort of get what you mean. Julia has a really mild form of Netherton's Syndrome, probably the only noticable difference about her now is her hair, as it's all different lengths all over her head. Her skin was really awful when she was an infant, but it's gotten so much better in the past year, that you'd really only think that she got a mild sunburn.

I've met some people with NS who are *really* red, or have extremely dry skin, or have absolutely no hair. I also go on support forums online for all types of ichthyosis (the only suggestion I got for shoes were Crocs, btw, I doubt they'd be helpful, and I see you found a shoe for EB anyway! Yay!), and some of the other types (like Harlequin's, or EHK) are really debilitating and are very noticable. A lot of people have some major depression, or the kids have a hard time with moving, or they get really overheated - and I just feel so out of place complaining that I can't get the scales off of Julia's scalp...when maybe someone can't crawl because the scales are so thick on their knees KWIM?

I don't think you should feel bad about needing to vent though, or minimize how your daughters' conditions effect you or them. You can have a different experience and still have a hard time. ((hugs)) I sometimes still feel really sad when I think of some of the things Julia will have to do differently in her life because of her skin and medical issues; sometimes I need to put it into perspective and think about the kids with EHK who can't walk, and appreciate how lucky we got - and sometimes I need to just mourn and vent for what my poor baby has to go through, mild or not!
I predict a riot.
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June 18th, 2007, 10:48 AM
LadyTkachenko's Avatar *~GreenTeamFeb2015~*
Join Date: Jan 2006
Location: WA
Posts: 13,615
I do feel extremely lucky because there are only a few skin disorders out there that can kill a person and EB is one of them. Considering how bad it can get I do feel very blessed that they only get blisters on thier hands and feet. On the bright side the my girls can't be inlisted into the Army because of thier condition. lol.....
Mom to: Malachi 15, Trinity 10, Anastasiya 7, Nathan 5

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