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#22912 - 10/18/08 01:29 PM Re: Important information (I hope) [Re: Lilies84]
rxlimom Offline
Member

Registered: 08/15/07
Posts: 41
I used Aquaphilic on my son for the first few months of his life. He has X-linked, and our pediatrician had recommended it for him. We bought it at a pharmacy -- It was on the shelf. It did work well, but never well enough for me to consider him "cured" -- There is no cure for ichthyosis. I quit using it because it has parabens in it and we used it twice a day, every day. Then again Johnson's baby lotion has parabens in it and I use that every bathtime on my new baby girl. Parabens are a whole other discussion!

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#22923 - 10/20/08 12:06 AM Re: Important information (I hope) [Re: BRIANNA_TROXELL]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
I discovered today CVS does not carry the 20% but Walgreens does. The 20% removes the top layer of dry skin off faster. I think it will help most everyone as much as it has me but I suggest you try it on a small part of your body for a few weeks. Good luck!
_________________________
Gary from Kansas

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#22924 - 10/20/08 12:11 AM Re: Important information (I hope) [Re: rxlimom]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
Yes, use whatever works best. For what it's worth what you bought was probably the 10% urea version. Few pharmacies even carry the 10%. The 20% removes the top layer of dead skin faster than the 10%. If someone does not have ichthyosis (skin growing too fast keeping body moisture and oils from reaching the outer layer) 20% would be too aggressive but 20% may be needed for ichthyosis. It is for me. If tried, try it on a small patch of your skin for a few weeks. I've only found Walgreens stocks the 20% in their warehouses. They special order it - takes a few days. But no prescription needed.
_________________________
Gary from Kansas

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#22926 - 10/20/08 12:40 AM Re: Important information (I hope) [Re: Lilies84]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
Sorry if anyone took what I wrote as a "pitch" or anything other than information that MIGHT help others. I did not write it is a cure. It is a cream that causes dead skin to fall off faster than normal. My dermatologist told me urea speeds up the process. I was not aware ichthyosis causes skin to grow FASTER until my dermatologist told me. I discovered today only Walgreens sells the 20% version. 20% would be too aggressive for regular skin. I'd suggest trying some on a small area of skin for a few weeks. I have no idea if it could be used on an infant. Consult a doctor. I am not one. I didn't know there was more than one type of ichthyosis until finding this site. I feel so sorry for those who have types much worse than mine. I didn't know what it was until my army physical. I flunked it (4F) because of it. That was 40 years ago. My wife discovered this cream about ten years ago. I am 61 so I suffered with ichthyosis for 51 years using $100 a month of J&J first-aid cream. Virtually all other creams had lanolin which makes ichthyosis worse. I doubt if a cure will ever be found until they figure out DNA genes many years from now. This cream just speeds up the process of what your skin does naturally -- falls off but VERY slowly for people who don't have this malady. Stop using it and it will all come back in two weeks or less.

I'm sorry there were doubters to my e-mail. I was simply trying to help. I am retired and have nothing to do with Medco. I did talk to them on the phone one time asking why their cream wasn't found in every pharmacy in the country. They told me they are a small family owned second (or third?) generation business and they liked their free time. They said they had offers from big companies but always said no. They are happy with their life style. I really enjoyed the conversation. Not many people like them. Some day they will sell to J&J or some other company and a jar will be $100. Anyway, nothing more to say -- if you want to try it I hope it helps. If not, that's OK too. It's a terrible disease but then I contracted Lyme disease five years ago and have learned what a REAL bad disease is (I'm 75% recovered).
_________________________
Gary from Kansas

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#22927 - 10/20/08 12:46 AM Re: Important information (I hope) [Re: w0tm]
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
I didn't take it as a "pitch". I could tell by your post that you were only trying to help and figured you didn't have anything to gain by making the suggestion to try the cream.

Thanks!

Olivia

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#22928 - 10/20/08 12:48 AM Re: Important information (I hope) [Re: Lilies84]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
Minor correction

Since there a few doubters I want to make sure everything I wrote is 100% correct. I said in my first post my wife discovered it 5 years ago but in a later post said ten years. I just asked her and neither one of us remember. It doesn't matter if it is 5 , 7 or 10 years but I still wanted to apologize for the error. BTW -- she has "normal" skin and uses the 10%. She loves it. She hates perfume smell skin cream which rules out most creams.
_________________________
Gary from Kansas

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#22929 - 10/20/08 12:51 AM Re: Important information (I hope) [Re: libby]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
Thanks - if you try it, hope it helps.

All the best,
Gary
_________________________
Gary from Kansas

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#22930 - 10/20/08 01:46 AM Re: Important information (I hope) [Re: Lilies84]
w0tm Offline
Member

Registered: 10/10/08
Posts: 7
Loc: Kansas
OK - sorry -- this is my last post tonight. I just reread my original post. I DID use the word CURED. Wrong, wrong, wrong. My humble apologies. It just "counteracts" the process of ichthyosis by causing the outer layer of skin to flake off faster allowing body moisture and oil to reach the surface.

I am brand new to this forum and I promise to reread my posts much more carefully in the future before I hit the Submit button. I am very active on several forums dealing with Lyme (you do NOT want to get bitten by a Lyme deer tick!) so I should have known better. Lyme has pretty well stopped my life for the last three years but I'm finally getting better. At least I didn't have to struggle with the constant itching of ichthyosis at the same time. I have to wonder what illness comes next?
_________________________
Gary from Kansas

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#22931 - 10/20/08 02:12 AM Re: Important information (I hope) [Re: w0tm]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Hey - no worries. I think just about everyone here knows there is no cure (yet) for ichthyosis. Relax...welcome...and thanks for your contribution and suggestions. Those of us who are relatively new to all of this are happy to get new info all the time so I hope you don't feel attacked.

smile
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#22938 - 10/20/08 07:02 PM Re: Important information (I hope) [Re: Lilies84]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
There may very well be a cure one day. But we are talking about genetic engineering. If and when the understanding and technology of genetic engineering reached a certain level of advancement, there may be hope for somekind of a cure. But I doubt in my lifetime, and maybe not for many lifetimes to come. And if it were to happen, I doubt that it would be for the already afflicted. There maybe methods and techonolgy of genetic manipulation that could "fix" the defective genes leading to ich that may allow afflicted parents to have unaffected children.

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