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#15870 - 08/08/05 11:02 PM dermatologists don't understand
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Hi everyone. I'm new to this board, first time posting. I have Lamellar Ichthyosis, was born with it. I have been enjoying reading the posts. Today I had a bit of a frustrating visit with my dermatologist. He is nice and seems to try to show compassion for his patients. However, when I explained to him about the pain I feel in the cold winter weather here in Michigan he said it is not ichthyosis related. I strongly disagree. I've seen many dermatologists over the years, some much worse and one in another state that was much better. But, none of them seem to really understand what I go through. My mother recalls the way I had a difficult time with the cracking,bleeding and extreme pain from the cold even when I was a child in West Virginia. Can anyone relate with this feeling or offer me any advice?

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#15871 - 08/09/05 03:29 PM Re: dermatologists don't understand
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
wva - The cold weather is the worst for people with Ichthyosis. No matter how good I'm sticking to my routine in the winter, my skin is at its worst. My skin doesn't crack anymore (hands used to when I was younger), but it does get very tight. I often tell people I feel like I'm burning in the winter. They don't get it either. Since Ich is not that common most derms. don't really know what to do with their patients except prescribe pills. Sometimes we just want to hear that they understand, but that doesn't happen often.
You could try a humidifier in your house/bedroom during the colder months. I have one and it definitely helps. Also soak in salt baths, which help remove the scales so the lotion can be better absorbed into the skin. If I skip too many baths, I notice the skin builds up slightly and it seems the lotion only sits on my skin, causing me to feel dry and slimy at the same time. Not fun.
I hope this helped.

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#15872 - 08/10/05 02:00 AM Re: dermatologists don't understand
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
I'm 26 w/ LI and I have the same problem in the South Dakota winters! Just a minute of exposure (going from the house to the car for example) leaves my hands so dry that they hurt to move. I'm always applying lotions throughout the day in the winter, too. People have a hard time belieiving me when I say that I prefer hot summers over winter, even though I'm beet red & can't sweat. I'd rather be red than unable to move!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#15873 - 08/13/05 07:41 PM Re: dermatologists don't understand
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
Thank you for that response about liking summer better than winter. I feel the exact same way. Though the summer is hard... the winter is much worse on me too. Finally someone out there does get my sentiment. Probably many people on this post can relate.
Quote:
Originally posted by immystique:
I'm 26 w/ LI and I have the same problem in the South Dakota winters! Just a minute of exposure (going from the house to the car for example) leaves my hands so dry that they hurt to move. I'm always applying lotions throughout the day in the winter, too. People have a hard time belieiving me when I say that I prefer hot summers over winter, even though I'm beet red & can't sweat. I'd rather be red than unable to move!

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