Mary J. -- Age: 63 Newton, Kansas
What type of ichthyosis are you affected with? Severe Lamellar Ichthyosis
What treatments do you use for your ichthyosis? I alternate between 2 topical prescription medications: Tazorac gel 0.1% and 8% more lactic acid added to the 12% Lac-Hydrin. They seem to make the skin peel better for me that way instead of using just one product. I also like to use Dermal Therapy on my hands. To keep my skin moist after each time I bath or wash my hands, I use Neutrogena Norwegian Body Moisturizer, which I learned about and was a free sample from the manufacturer at the FIRST Conference in Kansas City. I use a Bath Seltzer that is created just for me by a gal in Wichita that has a bath and body shop. She was willing to experiment with different ingredients until it worked for me. It contains several oils that I believe soften the skin so I can rub it off easier in the bath. I spend at least 3 times a week in the bath for longer periods of time trying to rub the skin off. For more info about her product, just email me. Skin grows rapidly in my ears also and attaches to the eardrums so at times my hearing is limited. Usually I can clean them out myself but I have broken my eardrums many times over the years. (But, as you all well know, with our rapid skin growth it doesn't take long for them to repair.) I have struggled the last 2 years with limited hearing and fluid in the Eustachian tubes. I just found a new ENT that understands my problem because he has some experience with patients with Ichthyosis. I now use DermOtic Oil that contains a small amount of a steroid. It thins out the skin in the ear canal and thinks it will keep the eardrum clean so he will not have to peel the skin from the eardrum. He also suggested that I use Zinc Sulfate because it should help with a certain enzyme (metalloproteinase) in the skin. I haven't used it long enough to know whether it works yet.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? Although a cure is getting closer each year, we are still only able to ineffectively treat the symptoms and not the cause. As a child, the only thing that we knew to use was thick and greasy, pure lanolin to try to keep the skin from constantly cracking and bleeding. The skin was often 1/8" thick. Then much later, when I was in high school, it was suggested that I put Aveeno in the bath water to help soften the skin. But we didn't have a bathroom, only an outhouse. Our round metal tub was too small, I thought. So I would go to the milk barn and get into the vat for washing up the milking equipment. I believe that it was after I graduated from college that I started using LacHydrin. Then sometime in the 70's, I believe, they came out with Retin A. That was the first significant product for me. Everything that I have used has been topical. I tried Acutane once but didn't like the side effects and was scared of it. That brings me to what I am using now which I probably started about 9 or 10 years ago. I feel that my ichthyosis is getting worse as I age, probably due to the hormonal changes that have occurred.
Tell us about the challenges you face, at this decade of your life dealing with ichthyosis. As always, summer and winter in Kansas are very difficult. In winter I deal with the dry, cracking, and bleeding skin. In the summer heat, activities are limited. There are so many things that I want to do that I can't. I exercise by riding my bike but I must ride early in the morning or nearly dark when the heat is tolerable. We limit any traveling to spring or fall because one time we were traveling across Kansas in the summer, our air conditioner went out and I landed in a hospital from overheating. Over the years, because of the limited products that worked for me, I would spend many hours in the bathtub scrubbing as hard as I could to get some of the skin off. Over the years I have damaged my spine and neck from pushing my body so hard against the hard surface of the tub. I would spend anywhere from 8 to 11 hours at one time scrubbing on weekends. I can no longer do that physically since I have aged. So, now I usually spend less than an hour each time, 3 times a week. As I continue to age, what happens when I am no longer physically able to take care of my skin at all? I will always hate the fact that I'm constantly shedding big flakes of skin. It is extremely bothersome and embarrassing. I can never have a clean house. We can vacuum the floors but as soon I walk where it has been vacuumed, it is dirty again -- even while I'm still vacuuming! Going anywhere: a friend's house, offices, restaurant, etc. -- I leave a trail of skin everywhere I go. Just like Hansel and Gretel.
What seems important now that that you are older compared with what seemed important when you were younger? I don't know if there is any difference. The goal has always been to find the best treatment for my skin. (I probably could have started my own store with all the products I bought through the years, thinking that I would find some cream, lotion, or potion that would help.) But as I grew older I became more pro-active in my own health instead of just relying on doctors. I have been studying herbs and supplements for the last 10+ years in search of treatments. Some things I've found I think have helped. For example: MSM Liposome Lotion coupled with MSM capsule/powder taken internally seems to help keep the skin softer and perhaps lessen buildup. Also as we know, prescription medicines also have bad side effects. The Tazorac that I use on my skin can elevate the triglycerides in the blood. So I take cod liver oil to keep the triglycerides under control. Cod liver oil contains Vit. A, which is also a benefit to the skin. Because of these medications I use and because I am not able to sweat (except on my face) to help remove toxins from my body, I use Milk Thistle to help cleanse the liver. Perhaps I have more worries now that I getting nearer to the end of my life than earlier: How to physically take care of my skin as I age and how to pay for the medication. The Tazorac alone is $1,452.00 every time I buy it. Insurance pays most of it now but what will happen when I retire and am on Medicare? There is a donut hole where they pay nothing for medications.
What hopes do you have for the future, taking your condition into consideration? Of course, my greatest hope for the future is the "cure" -- the enzyme replacement therapy -- in my lifetime! They are getting much closer and I want so much to see it while I'm still alive. Not only for myself but also for all the children and young adults so they don't have to go through the abuse and hurt that I did. I was teased and called "fish skin." All the rude questions of whether I was burned, fell in a mud puddle; all the laughing, pointing, and staring. I was asked to leave a swimming pool and was refused service in a restaurant, too. But the worst of all: the owner of a carnival that came to the county fair offered my mother money to let him take me on the road and put me in a "freak show." She quickly took me away from the fair because she was afraid that they would try to kidnap me. I owe my stable mental health to the presence of Yahweh (God) in my life, a loving family, steadfast friends throughout my life, and an understanding and loving husband.
What advice would you have for others affected? Live each day to the fullest. Persevere with HOPE. Any efforts to change our "lot in life" are important.
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