Date: 10/23/2023

This letter has been updated after a recent call from Thomas.

We receive correspondence from our members expressing frustration, when their go-to product is discontinued by the manufacturer.  For some reason, the "new and improved" product doesn't perform the same. Each member, even with the same type of ichthyosis, responds differently to products and prescriptions. Thomas wanted to share his experience again with you.  He would love to figure out the ingrediant that helps his skin. As always, please consult with your physician before trying a new routine.

I am a 67 year-old man with ichthyosis vulgaris, and I have an unusual story to tell you.  I’ll try to keep it short, but it’s a bit complex.

For many years I had no clue how to deal with this physically, mentally, and socially-devastating disease.  I tried all the creams, lotions, and ointments, to no avail.  I thought my life, and certainly my quality of life, was gone forever. Then, quite by accident, I discovered a product that completely altered the course of my life.  The product was a 2-in-1 shampoo and conditioner called Clairol Herbal Essence Shampoo for Normal Hair for Balanced Cleaning and Conditioning.  That is exactly how the label reads—top to bottom. 

I have no medical idea why, but washing my hair and head with this product eliminated ALL the flaking, scaling and dryness from my scalp, forehead, nose, arms and legs—virtually my entire body.  It also put an end to feeling freezing cold all the time, even in warm temperatures.  No more severe dryness, no more vacuuming of skin scales off the carpet or floor.  No more small, very painful, cuts/openings on my fingertips and cuticles which took forever to heal, only to return days or weeks later.  No more old man-looking hands or feet. No more static electric shocks from doorknobs, or getting shocked when I touched another person.  My skin would now tan nicely instead of just burning and quickly scaling and peeling.  Additionally, my beard grew about 30% faster (year-round) after using this product.  My body even began sweating differently—it was a warmer, more normal sweat, as opposed to a cold, clammy sweat.  And lastly, I could again wear black and dark-colored clothing in any fabric without embarrassment of flakes, or stress of being “found out.”  And I can’t tell you how uplifting that was to someone with this disorder.

A very important factor in the use of this product is that I had to wash my hair AND head, because just washing my body with it—which I tried, many times—did not help, or relieve me of the IV symptoms! One shampoo with this product would keep my IV symptoms at bay for 10-14 days.  I could take showers as long as I didn’t shampoo with another product or I would lose the benefits of the Clairol product.

Here’s what I know from my experience: 100 percent of the time after using this product, I had minimal, if any, IV symptoms.  On the other hand, 100 percent of the time I was not using this product, the IV symptoms returned immediately.

You can imagine my despair when I could no longer find the product, and subsequently learned this specific product (with its particular formula) had been discontinued. (This was sometime during the 70s or early 80s.)  Of course, I have tried hundreds of other shampoos and conditioners since that time; and none have brought me any relief.

There is so much more to tell you about my experience with this product and the disease. I pray this letter reaches you with open mind and pioneer spirit.  I have no reason, nor am I clever enough, to make up a story like this! 

Thank you so very much for taking valuable time to read and share my experience.  I will go to any lengths to answer any question or share any information I may have acquired in my 50+ years of experience with ichthyosis. I beg of you to leave no stone unturned to help me and others like me who have this horrible disease.  After all, who’d have thought moldy fruit and bread could lead to discovery of penicillin? I will do anything in my power to help you help us.  With heartfelt thanks and gratitude,

If you'd like to contact Thomas, he can be reached at 1-716-945-3151     

Tom McClune