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 KATIE: EB vs. EHK
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| Author | Topic: KATIE: EB vs. EHK |
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pauline5 Member Posts: 836 |
posted November 18, 2002 08:33 PM
   
I TRIED SUBMITTING THIS UNDER REPLY TO KATIE'S POST, BUT IT WOULDN'T POST FOR SOME REASON, DON'T TELL ME I HAVE BEEN BANNED FROM THIS BB.... Hi Katie, yes, you are right, EB is not a type of Ichthyosis, however, I did read somewhere that it did have similar genetic deficencies (if that is the right word for it) to EHK, because of the blistering component, and the extreme sensitivity of the skin, and thinning of the skin. I knew a girl at my school who had EB, and yes, it is a terrible condition, much worse than any of us...I met up with her after almost 15 years, and she was in her mid 20s and was in hospital having skin grafts on her lower leg, because it had ulcerated, and it ended up being a malignant cancer, and she died 6 months later.....so that is the main difference between EHK and EB, as our blisters cannot turn cancerous, and we don't get ulcers which can turn cancerous....EB also affects the internal organs, especially the gullet ect...as the girl I knew couldn't eat solid foods, and had her food vitamised, so we should all think ourselves very lucky.... by the way she was an extremely strong willed girl, she was a qualified practising social worker....Amazing woman.... IP: Logged |
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KatieCakes Member Posts: 117 |
posted November 19, 2002 02:46 PM
I hear you...there is one girl especially at camp that amazes me..her name is Jaime Gibson and she has the most beautiful voice..like an angel. I'm not even being polite..its sort of an opera voice and its so amazing. But the most astonishing part is that she sings at all...the blisters from EB hurt her esphogus so much and ate away at it that they ended up replacing part of her esphogus with part of her liver. The roof of her mouth is so blistered that it hurts her everytime she sings. But yet she has the passion for it..so she sings anyway. She has a cd out and another one is on the way. All the proceeds go to the EB foundation. Her brother hadEB as well and he died a few years ago. Jaime will eventually die as well..but she figures she might as well go out with a bang. She is so amazing..a gift from God. Katie IP: Logged |
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KatieCakes Member Posts: 117 |
posted November 19, 2002 02:49 PM
Hehehehe I just checked the other post...the one that glori posted to check who had posted..bc there were about 4 more replys..and three of them were yours..so it did get sent..lol. But perhaps it happened that way so you could really get the point across about your friend..  Katie IP: Logged |
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