Date: 09/29/2023

If you know someone with X-Linked or ARCI, please read and share; I promise they will thank you. I “HAD” X-Linked Ichthyosis, and this is my story.

It starts in the mid 70s, when doctors had no idea what my skin was doing or how to treat it. The few ideas they did have (slather up in thick gel, wrap up in saran wrap & try to sleep), was less torturous than the bullying at school. I had 3 lucky breaks; the first that X-linked is worse in the winter, and I live in Texas. My second was having a mother that was constantly searching (pre-internet) for a dermatologist that really knew what they were doing. My third, and by far the luckiest break, was when I started seeing Dr. Alan Menter in Dallas. I was 15, this was the late 80s, and at the time Dr. Menter’s office was two rooms on the 4th floor of a small office building.

Google Dr. Alan Menter today; he went on to open his own clinics and research facilities, speak internationally, author books, and has received awards & accolades too numerous to count. And my reason for sharing this with you? For 34 years I was seeing one of the top dermatologists in the world, with access to the best resources on the planet….and still I have had to suffer every single year from this disease.

Fortunately, one of the best things Dr. Menter ever did was help me connect with FIRST. The time they spend helping kids and parents is phenomenal (something I am well past), but I applaud their belief that the only thing worse than suffering from ichthyosis, is suffering alone. But the research? The research was definitely something I was interested in, and through FIRST I connected with Timber Pharmaceuticals and their study.

When I initially spoke with Timber in 2021, I was reluctant to get involved because the study uses Isotretinoin. I tried Accutane in the early 90’s but didn’t like the side-effects, (clearly I was not alone). But in speaking with Timber, I learned the medication is topical only by design, so it stays OUT of the bloodstream. The study is also international, US, Canada, France, Germany, & Italy.

So, I signed up and long story short, it works.

Let me repeat that, IT WORKS! For the first time in my life, the disease that has largely defined my life, is gone. The scales are gone. Worrying about covering up is gone. I can sweat and my skin can breathe. I just put it on after a shower & give it 10-15 minutes to soak in (because it’s thick & has a very short half-life).

For me, this is a miracle, which means my only worry now is Timber getting FDA approval. That’s why I am asking (and begging) anyone that can, please check into this study. There’s a good chance it could help you, and a guarantee that your involvement will help others. – James Ellis

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