Norma C. - Derby, KS - 2023
"Seventy-four years ago this month I saw Dr. Earl Netherton, a dermatologist at the Cleveland Clinic. I had a problem with my hair breaking off and not growing. Also, there was an unfamiliar rash on my skin. Fifty years after that visit, I was diagnosed with Netherton syndrome by a dermatologist who had an interest in unusual skin problems. I then found out that Dr. Netherton had continued his interest in my condition and published a report in 1958 on “Bamboo Hairs” 2. Netherton EW. A unique case of trichorrhexis nodosa; bamboo hairs. AMA Arch Derm. 1958;78:483. There was finally a name for my condition, but not a cure.
When I heard from FIRST regarding a clinical trial for Netherton syndrome by the Quoin pharmaceutical company I signed up and was accepted. I spent the next five months traveling to San Antonio for visits where I was examined by Dr. John Browning. The lotion I put on my arms once daily was keeping me from the rash I usually had. It was a great feeling. For the first time in my life I was not ashamed of showing my arms. I look forward to being able to use this lotion on a daily basis as soon as it’s on the market. It worked for me!!"
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.