Living with Ichthyosis
My Story and how I beat it
|04/04 Updated : 07/05
The type I have along with my brother, Autosomal recessive lamellar ichthyosis. There are many people with this disorder, disease or whatever it is... whom walk through life in shame, locked behind a barrier that preys on the surface of not only your soul, but your outer skin and your appearance to others. It is a disease of such tragic proportion that no one really knows how to cure it or contain it. There have been many stories from people & shared experiences, whom have tried different medications, oils, baths and the likes. Only to find out that the meds will have long lasting negative dire side affects and will only work while on them. There are those who have elected to have all of the scales "Cut" off....basically being skinned alive... to shed the horrible scales and crusty skin to live with scars, rather than humility and pain.
There are many theories and remedies about Ichthyosis, where it comes from and how to treat it. I say "theories" because I have viewed many web sites, read much documentation on this subject, lived with it for over forty years and in this day and age...An age where we not only walked on the moon, but photographed the surface of mars and can send tiny robots through our veins.....no one knows about Ichthyosis. I don't have all the answers but I am willing to share my story and what I have done to deal with my disorder and how I gave it a back seat after letting it "steer" me around for many years.
These findings and solutions are not simply mine, I share this disorder with my twin brother.
When we were born, we where the "catch of the day" two small lively premature fish that should have been thrown back into the water. A couple of facts to raise questions; both have hypoglycemia, and an astounding appetite and could never manage to gain weight. I weigh in at a mere 135 and have never been a lb over 140. My twin is the same way.
Through out our childhood and early school days, having Ich was not that popular and was something no one really knew about. We were labeled and scorned by other children constantly. No one wanted anything to do with us and avoided us at all cost. We went many years changing bloody socks, having taped up hands and at times not being able to walk or bend over. The scales where hard and crusty and we both along with our mom would spend hours scraping and soothing the skin, just to be able to move. Our bodies had no hair and the simple task of cutting a fingernail or toenail was no picnic. Our foreheads, face and eyelids would always be flaking and dry. Winters where the worst time and are the worst months for anyone with Ich to deal with. Of course living in the north east was not helping either.
At a very young age, our mother was determined to find a doctor who could treat us. We saw many and none where ever really found that had a clue or solution for our ailment. But one led us to an allergist as well as a good dermatologist. They were located in a huge Medical Hospital with a college for learning. The only difference in the treatment was the possible link to allergies as well as the skin problem.
After lengthy exams and many, many needles up and down our arms and legs, it was mostly trial and error.. trying to determine what we suffered from and how to remedy it. After many years of using prescription lotions and ointments we both found that all of it was mostly "guess work" and no one really knew how to treat us. But the allergist I think, was on the right track. Although Ichthyosis is not an allergy, it is an acute problem associated with other surface ailments and one that mimics other allergies related to what it does to one of your organs. We found that staying away from foods that de-hydrate, medications that had lasting side affects, man-made chemicals, such as lauryl sulfate, Dimethyl oxide and sodium chloride (used in soaps) and using other maintenance procedures we could manage our disorder.
During our teenage years there was a time we where placed on an all liquid protein diet, eliminating processed foods, prescription ointments and special bath oils, Keri lotions and such. Our condition seemed to be controllable to the extent that it was comfortable, but missing real food prevailed and we eventually went back to eating normal food.
I made reference to us being "Fish" in the beginning....which for the most part is basically true to the extent that "we" too need water. People with Ichthyosis are dependant on moisture.....To relieve some of the painful affects of Ich and feel more comfortable. We have gone many years buying every kind of lotion, potions and the likes that claim to "heal" the skin. I think I have used just about everyone there is...Store bought, prescription and mail order. If I haven't..."they haven't made it yet"...lol.
I think everyone with "Ich" can tell you that moisture does help and when the humidity level is at it's highest, than the more comfortable they are with their condition. Don't spend a lot of time trying to moisturize your skin, spend more time on how to find ways to retain the moisture that your body is already producing for your skin. I have seen people post questions and concerns regarding the way Vaseline and other applied lotions stain their clothing and ruin most of it. If available in your area, try Glycerin. (not petroleum grade used for lubrication) It is a little sticky, (If used without cutting it) but retains the moisture in your skin. Pure Glycerin is supposed to be mixed with another liquid and should not be used without doing so. It is all natural and something I found by accident. although not easily found.....add a very small amount to your favorite lotion. You can buy lotions with glycerin, but they don't have enough to aid persons with Ichthyosis, they only offer short term relief. . Also check to see if your lotion has any type of man-made chemical, fragrance, or alcohol, if so, get rid of it. Most people people with Ichthyosis, like us are instructed on ways to sooth the condition and not really get rid of it. I set out to do just that, and have been very pleased with my outcome. All of the lotions on the market targeting people with severe skin conditions DO NOT cure it, they only make it more comfortable to live with and sooth or moisturize the presenting condition as it is.....You need to get rid of it!!!!!!
I do not scrape, exfoliate or soak for long durations anymore....! I used to...and boy, I can't begin to describe the pain & humiliation of what that was like. I wish this disorder on no one and if what I write here helps just one person with "Ich", than I have shared what I know and offered someone some relief to what can be a lifetime of shame, embarrassment and a "monster" that will, as it did me, get in the way of all that I did. Gym class, summer sports, swimming in public, wearing long sleeve pants and shirts all year long....Self esteem, etc. I could go on and on.
Another thing we found was that one of the first things you need to do is..."Get Naked". Thats right....get rid of those long sleeve shirts and long pants. Do not wear Blue Jeans, tight clothing, tight underwear and do not sleep with any cloths on. Use polyester sheets and stay away from cotton. All of these things rob your skin of all of the essential oils that it already is lacking. Start loving "Boxers", male or female and get in the habit of wearing them; relaxing, watching tv, cleaning, etc. A nice loose a-shirt, tank top or tee shirt will be your new "House cloths". I got so used to wearing boxers, I once went to Walmarts with my sister and didn't even realize it until I went to reach for my wallet in the pocket that wasn't there.
Another very extreme solution is to go south. We went south for one whole summer when we were younger just for that reason. Just about every single sign of "Ich" disappeared. And the more we frequented the south, the better our skin became.
Of course this goes without saying that while there we did still go through the daily ritual of moisturizing and spending as much time as we could in the Ocean....The Salt water has so many benefits. And after time our moisturizing was eliminated and replaced with simple tanning lotion. Our sweat glands started to work and hair follicles started to grow.
If your Ichthyosis, is severe. It would be well worth it to get to a more humid climate and stay for several months. It gives your body a chance to understand itself and learn how it is supposed to work properly, your sweat glands start working and your skin, which is an organ; is given plenty of time to heal itself. The biggest contribution to my getting my skin to a somewhat normal state was frequent trips to the Caribbean (3-a year). I know that could be costly, but believe it or not, some insurance companies could or possibly would pay for your transportation, if you could convince your primary care provider (Doctor) the benefits of such a retreat or therapy session. (At least someplace in the states, such as Florida)
When I was younger, there were many days during the winter months and throughout most of the summer where I couldn't even walk., when walking created nothing but pain and bloody socks. There where days when I used to sit for hours and scrape myself raw to get rid of the thick scales. I still have problems with the winter months, here in the north. but not to the extend I did when young. I stayed away from friends and let my condition shut me in. It was bad. My brothers skin is even more dry and he suffers from Split feet and bloody hands mostly all year long. He is not as determined or conscientious as me, and the one thing I have noticed , I took all the trips south. I have also recently noticed that I have a re-occurring problem with my left hand & only my left hand. (Scaling) Which makes me question the validity of this Condition & and how it could also be related to a circulation problem as well. Or it could be I need a trip to St. Thomas.
I am placing a picture here of me not to offend or annoy those of you who have not found the solution or a doctor that understands your condition, but to show you that, my years of testing, experimenting and countless hours doing what I do has paid off for me with out surgery or drastic steps to remove my skin. and I am no longer seeking out medical solutions for something not even the medical field itself has accepted or understood. The picture here is of me at 46...(No lie). I have been almost 16 years free of the most severe symptoms and have stuck faithfully to my regular regimen. I am currently following a German Regimen and I know already the results are going to be even better than what my first method was.
I wish all of you the best if you suffer from Ichthyosis and will help you in anyway I can. Answer questions, or offer support. The most important thing in your life is yourself and to not let the "Ich" monster take it away from you. 16 years ago, A picture of me would have been unheard of and one of the most embarrassing things I could do. Even visiting the Doctors where the most painful and embarrassing periods in my life. Today, there is no more embarrassment or shame. I have learned to Hide and suppress most of the symptoms and signs. But I know that if I do not stick to my regimen, it will all return. I went all of last summer with very little signs of having "Ich". Until the dry cold weather set in. Did I stop my treatment and care, not at all. I think this is one of the biggest mistakes people make with "Ich", Like I said earlier, it doesn't go away over night and you have to work with it. Your skin may look good, but remember, you have Ich, and if you ignore the Ichthyosis process, it will just creep up and you will start seeing signs again. Be determined and dedicated and disciplined in your treatment.
2005- Current signs of Ichthyosis
Left hand, scaling very slightly, on average every 14 days.
Both legs, 8" calf area....very slight flaking every 2-3 weeks. (Desquamation) Which I ignore, it simply goes away with regular showers according to my regimen.
Currently Experimenting with a Urea/Glycerin/Arginine/DHEA Regimen. I am trying to eliminate all together the daily routine of moisturizers and oils. Actually the only area I do my regimen on currently are my extremities. My upper Torso is pretty much all cleared up, even the lower part of my back and back side of my upper arms.
Other notes to this page: Tanning, Yes I love the out doors, seems to help tremendously, especially when I sweat. Also during the summer months, my body seems to grow more hair on my arms and legs. (Always fine hair)
Regular strenuous exercise is also part of my regimen, I cycle Daily 10-20 miles. Until I sweat. If I don't, for some reason, my ankles & Feet start to swell.
This is me today. Years ago I would never have posed for such a picture, my skin was all dry, peeling, crusty and I was very embarrassed by my looks. Today I can go shirtless. I even posed several years back for a tanning lotion Ad. My feet don't crack and bleed and my hands are much improved over what they used to be. I still have problems with my left hand in the winter. It will on occasion crack and bleed. The banner on this site is a picture of a clothing optional beach in Florida. Growing up as a young adult, never did I ever think that I could experience going to a beach like that.
This website is not a hoax, nor is it to be taken lightly. My condition drove me to the brink of loneliness and despair, I set out to do what I intended and having been very pleased with the outcome. Finding no website or doctor who could help me, I thought it only right to share this information with those of you who have "Ichthyosis or know someone that does. Its not about topical aids and or ointments to sooth the condition, its about getting rid of it. Which can't be done, but you can make the Condition hide itself and give your body and life a chance at something normal. My skin in the past showed all of the same characteristics as those pictured below. Today I have very few signs of Ichthyosis and at times, none at all. My condition has been very well documented and treated unsuccessfully for many years at a younger age and most of my early adulthood.
Please look at my pages and try some of my remedies or techniques. I have experienced no Side affects from my regimen. Feel free to contact me with questions and or concerns. I am willing as best as I can to help others who want to manage and rid themselves of the devastating condition known as Ichthyosis.
|Recessed Scales, Scaly Skin, Dried and Crusty Skin, Peeling Feet.....All sounds to familiar. But these are all conditions I no longer have to deal with. Just Manage and prevent their return.||
Where I am today...I am going to post some Actual pictures of my skin and current problems. Please understand that this condition is a disease and to not try to fool anyone into thinking they can't "cure" it. Or perhaps that they can....It won't happen overnight. But by following the treatment that european doctors are prescribing, I have made a lot of progress and I can't complain one bit as far as my results go. Of course this goes without saying...There is no cure, but you hide all the affects and damaging conditions with daily treatment.