Comments for Confetti Skin, Beauty Within Navigating life with ichthyosis Sun, 23 Nov 2014 14:55:51 +0000 hourly 1 Comment on Life with Harlequin Ichthyosis: Newborn Surprise by Ron Sun, 23 Nov 2014 14:55:51 +0000 Hi, you may suggest to the medical professionals who deal with this unusual phenomena to submerge the baby from birth in a tank of pure liquid oxygen as they often do for severe burn victims.

Comment on Life with Harlequin Ichthyosis: Newborn Surprise by griselda allen Wed, 05 Nov 2014 19:31:25 +0000 May You be blessed for the wonderful way you cope. Remember that when God takes you to something He brings you through it. xlove to the lil angels.

Comment on Epidermolytic Ichthyosis: Hands and Feet? by sharon hutcheson Sat, 11 Oct 2014 00:18:46 +0000 My son and I have x linked ichthyosis. My hands and feet are painful cracked,inflammed,thick skin that is so dry it cracks and bleeds. My son is a little different with his symptoms, he affected over most of his body. Do you have info with this type of moms and sons ichthosis.?

Comment on Epidermolytic Ichthyosis: Hands and Feet? by Lawrence Thu, 09 Oct 2014 18:39:42 +0000 Have two brothers with this condition in Africa.Would like to hear more in advances with medicine.Thanks

Comment on Life and Love With Ichthyosis by sikander salamat Thu, 09 Oct 2014 09:35:28 +0000 i am from pakistan. In pakistan all no one can love me, i am feeling alone and i am also sufferd from ichthyosis. i am always depress with my skin and thinking why me

Comment on Free Aquaphor for patients with ichthyosis from Beiersdorf by Liz Herrera Mon, 01 Sep 2014 21:13:09 +0000 Hi Everyone,

I have a nine year old son with X-linked Icthyosis. I learned of this program from a Ichthyosis Facebook group today. Is this offer still available. We live in Texas. Thanks in advance.

Comment on Free Aquaphor for patients with ichthyosis from Beiersdorf by Beth Bresnahan Thu, 21 Aug 2014 16:43:47 +0000 The fax # has changed again .. I just found out today. It’s 203-563-5940.

Comment on Honey and Healing? by Jennifer See Tue, 15 Jul 2014 16:27:30 +0000 Hi, Jim! Thank you for writing! It was great to hear your story and that you found our blog helpful.

When writing about “snake oil,” we are talking about how many sites attempt to scam people, claiming that things are a magic cure-all. Coconut oil may or may not help ichthyosis, and that remains up for experiment and debate, but two things are certain – it is a treatment, not a cure, and the sites that market coconut oil (or any other product) at a significant cost while claiming a cure are almost certainly a scam.

I checked out some of my favorite claim evaluating sites and came up with these:

Basically, they say that there’s no evidence that it works, but there’s no evidence that it doesn’t work, either. And it’s fairly harmless to try, so long you aren’t breaking the bank over it.

Comment on Honey and Healing? by Jim Bradshaw Sat, 05 Jul 2014 13:03:00 +0000 Tuesday, July 01, 2014


First and foremost thank you very much for you wonderful website blog.

I have learned a great deal more about my X linked Ichthyosis in the last 2 months, thanks to your blog, than I knew in spite of living with it for my 72 years. All I knew before was the name “Ichthyosis” and that only males got it and it was genetic from my Swedish mother. I was told that my sweat glands do not sweat. Yours and First Family’s web site has changed all that.

I had a male cousin on my mother’s side (her sister’s son) who had a serve case of it. He never attempted to do anything to take care of his Ichthyosis. My case would probably be called moderate and I was able to keep it in check by daily treating it with a mixture of petroleum jelly and baby oil.

The reason that I’m writing to you is that I accidently found something that has helped my dry skin from within. As stated earlier I’m 72 years old and I believe that I may have Dementia if not an early case of Alzheimers. Back in January 2014 I started to research on the web what if anything I could do to help my rapidly declining memory. A friend of mine suggested a Ted talk “Unconventional But Effective Therapy for Alzheimer’s Treatment”

I followed the suggestion of Dr. Newport and started taking daily oral doses of coconut oil (10ml 3 times daily 4hrs. apart) for my loss of memory. And was I ever happily surprised that my mental conditions were reversed, just as her husbands’ were. The coconut oil with its MCT’s (whatever they are) was reversing me back to where I was mentally about 2 years ago. Further research indicated that coconut oil is effective in only 50% of Alzheimer’s cases &/or people who have what is now being called Type 3 Diabetes. (not enough energy going to the cells). I’m grateful that it appears that I’m one of those lucky people for whom it works. Not only is my memory better but more important to me is that I am now motivated to do and live life, rather than just walk around in a fog all day with my eyes open. I’m vibrant as I use to be. Not only are my mental capacity’s better but most of my other age related declines are much improved.

I started taking the oral coconut oil at the beginning of March when it was still very cold and snowy in Chicago. Around the beginning of April I was again happily surprised to begin to notice that I was starting to sweat like it was the middle of a hot and steamy summer. I never expected this. My skin was clearing up. Is this for real? It appears so. Now that it is July my skin is better than it has ever been that I can remember. Almost close to normal except my lower legs and feet have a ways to go, to become clear of the Ichthyosis like the rest of my body is now.

I was thinking of going to the First Family Conference in Indianapolis Indiana a few weeks ago, to tell my story and find out if I was the only one with this kind of success. Unfortunately I could not afford that kind of expense for someone living on a minimum amount of Social Security. Thus this contribution to your blog.

I’m aware that in your article “Honey and Healing?” that you include coconut oil with all the other “snake oil” fakes as well as saying that it was the latest “fad” in your “The Trouble With Science” article. I have no finical interest in any coconut oil companies. I’m only interested in what is the experience of others with internal coconut oil in relationship to their Ichthyosis. I don’t think that internal coconut oil is a “cure all” for all types of Ichthyosis nor do I expect that my Ichthyosis will be completely gone but it sure has reduced and improved this old man’s skin conditions. Maybe internal coconut oil only helps older senior white men, who have Alzheimer’s, who have Type 3 Diabetes, and who have X linked Ichthyosis.

I sure would like to know what you and others think.

Thanking you in advance:

I’m Jim Bradshaw

Comment on Epidermolytic Ichthyosis: Hands and Feet? by Pamela Blubaugh Thu, 26 Jun 2014 21:21:48 +0000 I have #4 en – confetti type 1. My palms and soles of feet are clear. I attended the conference in Indy and found in my goodie bag a product that is amazing. DerMend alpha+beta hydroxy therapy. This product stings a little at first but to be able to apply to my entire body right after a bath and be able to put clothes on is a blessing. I have always used vaseline or aquaphor. These products make me feel better but in order to dress I have to wipe the biggest majority of it off ( defeating the purpose). With the Dermend alpha+beta hydroxy therapy cream a little goes a long way and I do not have to wipe it off. Please try this product and let me know if it worked for you. I will warn that if your palms are clear, I recommend you wear gloves to apply to the rest of your body. This product also has a sun warning ( be very careful). This product not only changes the appearence of the skin scales, it also leaves you feeling completey moisturized. Little to no oder. For parents who are not affected trying to help their children I suggest that you treat them as if they were a burn paitent. When bathing make sure the wash rag has plenty of product or soap and be as gentle as possible. My skin hurts to touch so anything that is cold hurts. When applying product, rub it in your hands first to warm before applying to your child. Again, applying very gently. If going out to work in the yard I soak a white long sleeve shirt in cool water, ring it out and put it on. Not only does it keep me cool, protects from sun it also keep the skin hydrated making it easier to remove in bath or shower. For the comment above. I too get big clusters of blister like sores that cvome and go. They are very painful and do not seem to be filled with anything, tend to appear on eyebows, nose, ears and on back right above buttocks. I use preperation H ( Yes the hemorrhoid cream)it takes the pain and swelling from these blister like sores away. Hope this helps.

Pamela Blubaugh