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#6954 - 02/16/07 04:11 AM a couple of questions
zerosignal Offline
Junior Member

Registered: 02/15/07
Posts: 3
Loc: Chicago, IL
Hi all.

I'm Nick, new to the boards. I was diagnosed with x-linked yesterday after dealing with it my whole life (I saw a dermatologist when I was about 11 for warts and I was just told I have dry skin).

My apologies if these questions are answered elsewhere, but I did a search and didn't really dig up anything.

1. What do you all use for a body soap/cleanser? I've been using the CeraVe cleanser for a bit but it gets no lather and I subsequently run through the expensive ($14) bottles every week-and-a-half or so. I was looking at the Cetaphil liquid cleanser but the packaging specifically said "low lather". I'm gonna give the Cetaphil bar soap/cleanser a try starting tomorrow but was wondering if this low lather quality is something that I will find across all severe dry skin products.

2. Are there any connections between x-linked and cold hands/feet? I know there are issues with perspiration and potential overheating (i get incredibly red in the face when I exercise) and was wondering if there are specific ties to hands/feet being cold. My hands are always significantly colder (feet usually as well so i try to not take my socks off) than the rest of my body and often it is tough to warm them up and keep them warm, even in midly cold weather (high 50s & 60s).

Thanks in advance [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#6955 - 02/16/07 04:49 AM Re: a couple of questions
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I do not have X-linked but have severe Vulgaris (how do I know it is not X-linked? Females in extended family have ich). I am familiar with cold hands you mentioned. I do not know why it happens sometimes. Probably has to do with cooling function and malfunction of the skin due to ich.

Question to you: can you sweat? You mentioned you get very red, but do you sweat at all when you exercise or in the summer? Are you at risk of either kinds of heat intolerance? Heat stroke or prickly itch? Thanks.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#6956 - 02/16/07 05:17 AM Re: a couple of questions
zerosignal Offline
Junior Member

Registered: 02/15/07
Posts: 3
Loc: Chicago, IL
Yes, I do sweat, but usually not a lot in comparison to others after exercising...mostly just my face being incredibly red & hot.

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#6957 - 02/16/07 01:28 PM Re: a couple of questions
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Nick
Welcome to our ichthyosis bulletin board and happy you joined us.I have x linked ichthyosis too and can give you a few suggestions.
(1) For many years I used Ivory soap and found it to be very cleansing, but it dried my skin. Many at our ichthyosis conference in Atlanta commented on Dove`s Moisturizing Soap and it has made a huge difference.It lathers very well, and doesnt leave that dried out skin feeling after showers.
(2)I agree with Promiseland about the cold hands and feet. In the summertime, my scales would go away and I have no problems with perspiration/sweating. It is in the winter months where my skin tightens and the scaling is on my legs and arms.In my youth, sweating was more difficult and I experienced the prickly heat Promiseland mentions.My face would go red, and the itching and needle-like feeling on my back and torso would cause me to shed my sweats for the cold of the winter air.I am in central california and the winter climate is not anything compared to living in your hometown.
For more information, check our FIRST foundation website at www.scalyskin.org and our website here at www.icthyosis.com. Thank you for your post Nick and I hope to see more in the future.
Sincerely,
Les
_________________________
Les Avakian

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#6958 - 02/16/07 03:55 PM Re: a couple of questions
joey000245 Offline
Member

Registered: 02/06/06
Posts: 56
Loc: JENSEN BEACH FLORIDA
HI NICK,
I HAVE X LINKED ICH AND HAVE BEEN USING AQUA GLYCOLIC LOTION FOR OVER 22 YEARS NOW AND IT KEEPS MY SCALES OFF.
I LOOKED LIKE AN ALLIGATOR, EXCEPT IN THE SUMMER MONTHS, PRIOR TO THAT, AS THE SUN MAKES MY SCALES COME OFF.
I LIVED IN NEW JERSEY UNTIL 1990 AND THE GLY LOTION KEPT MY SCALES OFF, EVEN IN THE WINTER. I HAVE LIVED IN SOUTH FL SINCE THEN.
IT TOOK ABOUT A MONTH FOR THE GLY LOTION TO START TO WORK, AND PROBABLY ANOTHER MONTH TO COMPLETELY CLEAR UP. I USED IT 3 TIMES A DAY AS PER THE DR. INSTRUCTIONS. I SAW DR EUGENE VAN SCOTT. OUTSIDE OF PHILA PA. I ATTENDED THE 1ST. FIRST CONFERENCE IN CHICAGO IN 1983 AND HE DID A PRESENTATION ON TOPICAL CREAMS. AFTER THE SCALES CAME OFF I CUT BACK TO EVERY DAY AFTER A SHOWER. I ALSO USE DOVE SOAP. NOW I USE THE LOTION EVERY OTHER DAY.
I HAVE A COUSIN WITH X WHO LIVES IN MICHIGAN AND HE USES THE DERMAL THERAPY LOTION, WHICH YOU CAN PURCHASE IN CANADA. HE HAS EXCELLENT RESULTS WITH THAT.
ANY OTHER QUESTIONS, PLEASE FEEL FREE TO E MAIL ME AT joey000245@aol.com

X LINKED JOE

------------------
JOE GALLUCCIO
_________________________
JOE GALLUCCIO

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#6959 - 02/16/07 10:49 PM Re: a couple of questions
Luciana Offline
Member

Registered: 05/18/03
Posts: 63
Loc: Neuchâtel, Switzerland
Hello Nick,

I have CIE nb and I get also very red/hot in my face when I exercise or in Summer when the temperature is over 85° F, and my heart beats very fast... I don't sweat, or rarely only two drops on my nose, but that's all.
My feet & hands get cold easily when the temperature drops below 70° F, especially if I stay still, like now in front of the pc, so at home I usualy wear two pair of socks ... and right now I even have my feet on a hot water bottle [img]http://www.ichthyosis.com/ubb/smile.gif[/img], because if I don't keep them warm, I feel cold all over my body and I shiver.

Take care and all the best,

Luciana

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#6960 - 02/16/07 11:57 PM Re: a couple of questions
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Have yout ried the Olay with Shea Butter? It is in a white bottle with yellow lid, etc. My son has Lamellar and it works great. Definately has a lather. It is less than $4 a bottle.
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#6961 - 02/17/07 02:07 AM Re: a couple of questions
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
I second the Olay body wash with Shea Butter. We use it on both of our kids with Lamellar and it is wonderful! I have tried Dove body wash with them as well. The Dove body wash is good too but we like the Olay a little better.
Lisa
_________________________

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#6962 - 02/20/07 06:57 AM Re: a couple of questions
zerosignal Offline
Junior Member

Registered: 02/15/07
Posts: 3
Loc: Chicago, IL
Thanks so far everyone. I'm gonna run with this cetaphil bar soap for a week or 2 and see how that goes. Otherwise I'm gonna give the dove/oley w/ shea a butter a chance.

I'll report back here with my findings.

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#6963 - 02/20/07 02:20 PM Re: a couple of questions
R Offline
Member

Registered: 02/20/03
Posts: 226
Aveeno colloidal oatmeal soap works well for me. I actually got the recommendation off this board from somebody, though can't remember who it was. I would have never thought a commercial brand soap would work well but I was fully surprised at the difference it made. I actually prefer it to the cetaphil soaps.

As for cold hands and feet, I've alway been very sensitive to temperature changes. I remember when traveling as a child that I would shake uncontrollably at times because of the cold difference. It's not limited to my hands though, my entire body is more sensitive to temperature differences than the average person.

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