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#6400 - 12/01/06 08:42 AM Ich Vulgaris - New to forum
spudpunk Offline
Junior Member

Registered: 12/01/06
Posts: 2
Loc: Canberra, AUSTRALIA
Hi Everyone!
This is my first post on this site. I am a 31 year old Australian woman, and I suffer from IV. My elder brother also has this condition,however not as severely as myself. We have no other known family members with this condition. I would describe my IV as moderate. This past week, the weather has been uncontrollable. Desert hot one day, Antartic conditions the next. Due to this, my skin has gone crazy. I feel like a human snake, with large portions of my body peeling off at a time. It seems no matter how much cream I rub on, my skin just can't seem to absorb it quickly enough. I work as a midwife, and had to take the week off as my hands look hideous. To top it all off, I could not find a Doctor (Dermatologist) anywhere remotely close to where I live who would review me. When I went to my GP, he had no idea what IV was, and he actually said "ewe, what's wrong with your hands"!!! And he's the doctor! I know I am preaching to the choir, but I really needed to debrief. Thanks for listening! Cheers - spudpunk

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#6401 - 12/01/06 11:11 AM Re: Ich Vulgaris - New to forum
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi spudpunk:

I don't have IV ... (I have EHK)but i can definitely relate to the extremes in the weather really messing around with our skin as I live in Melbourne...

All i can suggest is that on bitter cold days, really rug up, and try wear clothing that prevents the cold wind from getting to your skin...this should hopefully keep it insulated and reduce drying and cracking...

what sort of creams and ointments do you use? also try visiting the Ichthyosis Vulgaris topic here, and i am sure there will be heaps of information for you...

Also try and make contact with either Jeff or Christine (they both visit this bulletin board) from Brisbane who are currently compiling a list of people who have Ichthyosis in Australia, and linking them together.

Good luck with it, and welcome aboard.
Pauline

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#6402 - 12/02/06 06:59 AM Re: Ich Vulgaris - New to forum
spudpunk Offline
Junior Member

Registered: 12/01/06
Posts: 2
Loc: Canberra, AUSTRALIA
Hi pauline,

Thankyou for the reply, great to hear from someone who can relate! I received an e-mail from Jeff and Chrissy, and signed up on the site. Thankyou for your suggestions, much appreciated. I think I have used just about every "dry-skin" preparation available. My skin seems to like lanolin and sorb creams mostly. You name it, I've tried it! Look forward to future chats.
Thanks...Suzy (spudpunk)


I don't have IV ... (I have EHK)but i can definitely relate to the extremes in the weather really messing around with our skin as I live in Melbourne...

All i can suggest is that on bitter cold days, really rug up, and try wear clothing that prevents the cold wind from getting to your skin...this should hopefully keep it insulated and reduce drying and cracking...

what sort of creams and ointments do you use? also try visiting the Ichthyosis Vulgaris topic here, and i am sure there will be heaps of information for you...

Also try and make contact with either Jeff or Christine (they both visit this bulletin board) from Brisbane who are currently compiling a list of people who have Ichthyosis in Australia, and linking them together.

Good luck with it, and welcome aboard.
Pauline [/B][/QUOTE]

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#6403 - 12/02/06 06:43 PM Re: Ich Vulgaris - New to forum
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Welcome to the board Suzy.

I have what I think of as moderate IV as well. As it happens, I also have a sibling (a younger sister) who also has IV, as does my father.

In Canada we are entering the winter months when trying to treat my IV is the most challenging. I would have thought that in the Southern hemisphere it would be the beginning of the "happy season" with the onset of summer, but I guess that really depends on local climate.

Winters have become a lot easier for me since
I started using Urea-based creams about 20 years ago. It has worked better for me than any other humectant or exfolliant. I use a lotion that combines 10% urea with 5%AHA (lactic acid) on my entire body except my face. On my face, which is less affected, I use a 1% Urea lotion in the winter. My feet are a particular problem in the winter as they are especially prone to thickening skin and cracking. There I use a 25% Urea cream as well.

I layer all these urea lotions with a thick moisturizing lotion.

Another major improvement to my skin happened when I switched from use moisturizing *bar soaps* to moisturizing mild liquid *body washes*.

During problem months, if I have persistent scaling, I also find that salt baths aid the removal of "stuck-on" scaling. Not only does this allow me to feel better about the appearance of my skin, but it also allows the lotions I use to be more effective.

Although you may already have tried some or all of what I just mentioned, I wanted to describe my skin regimen as, you and I have the same type of ich, and have to contend with 'less than ideal' climates.

BTW dump the GP. [img]http://www.ichthyosis.com/ubb/wink.gif[/img] I'm aghast that a doctor whould say "Eeww" when seeing any medical condition. A doctor should know that such an exclamation can be hurtful to the patient especially if it is a chronic condition that the patient has been dealing with for a long time. I have heard enough of that kind of reaction from strangers, and I would be quite taken aback if I had to deal with it also in a doctor's office. In addition to professionalism and expertise, I expect compassion, decency, and tact from medical professionals. It's disheartening to read that you had to deal with such a comment from a doctor. If that happened to me, that doctor would forthwith see the last of me and my medical file. Well, that's my editorial for today. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

I hope your skin soon becomes manageable again.

[This message has been edited by gryphon (edited December 02, 2006).]

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