Just Dry Skin, or a Gene-Linked Disease? Get Thee to a Dermatologist
Feb 05 '03 (Updated Jun 16 '04)
The Bottom Line If something doesn't look or feel right, go to a doctor. If a general practitioner can't help, see a specialist.
I thought I just had dry skin. Very dry, but nothing "special". I lived my entire life battling my skin, and cannot express how relieved I was to finally get a real diagnosis on what exactly was wrong with me. But let me start at the beginning.
My history with my skin:
I've had skin "issues" since birth. Lots of 'em. Nothing was serious enough to cause great concern, and when I was younger I thought that everyone's skin was like mine. Although it was an annoyance I've had to live with since childhood, it wasn't until I was in high school that I got really self-conscious about it.
First, my skin is extremely dry. Not so dry that it cracks and bleeds, but so dry that the dry skin flakes off in big white flakes. I used to call it "dandruff of the entire body". My mother asked my pediatrician about it, and I later questioned my general practitioner, but they only gave me lists of creams to try. Nothing ever worked.
My type of dry skin was only a minor annoyance, it didn't itch or make me uncomfortable, but I think the stresses and strains of trying to "fix" my skin caused me more anguish than the skin itself. I remember my mother claiming it was all my fault -- that I didn't scrub hard enough when I was taking a bath. I would rub my skin raw with loofahs and scrub-brushes, only to have skin flaking off again a few hours later. As a child I can remember my pediatrician recommending we put A&D Ointment all over my arms and legs twice a day. I'm a fan of A&D for small, localized skin problems, but putting it all over one's body turns one into a big sticky mess. Words cannot adequately describe how much I hated being A&D covered. I've taken more oil-baths than I care to think about. Nothing ever worked.
Another skin issue I had as a child was a more major annoyance -- I was allergic to the sun. It's true. If my skin was in direct sunlight for more than a few minutes I would break out in big red welts across my arms and legs (wherever I had been exposed). I had prescription sunblock as a child, and grew to hate slathering the sticky stuff on whenever I was going to go outside, even for a few minutes. Fortunately puberty managed to curb my sun-allergy -- these days I might get a minor rash on my first sun-exposure after a long winter, but I'm fine after that. I still use the strongest sun-block I can find, and I cannot tan.
Although my sun allergy went away with puberty, a few new problems emerged. I am not a very hairy person, but wherever hairs were supposed to grow on my arms and legs, I instead got red bumps. It was as though my skin had grown over my pores, not allowing the hairs to come through. Basically, all of the hairs on my arms and legs were ingrown. I could break them out, which sometime left a sore, but as soon as a hair fell out or I shaved my legs, the pore would close again and the new hair could not break through. I was incredibly self-conscious about this. I remember hating gym class -- not because I wasn't physically fit, but because you had to wear shorts, and people would see the ugly red bumps all over my legs. Once again we asked my doctor, who just said "Well, you have a problem with ingrown hairs, probably because your hair is so fine -- just exfoliate better"
Yet another issue emerged with the onset of puberty -- I could not sweat. At least not enough to do what sweat is supposed to do -- cool you off. I didn't even realize it was related to my other skin problems until very recently. I was a very physically fit person (I was a classically trained ballet dancer), so I had a high endurance level anyway, but if I over exerted myself I could not sweat enough to cool myself down. I learned to recognize the signs that I was about to pass out, and would simply sit down until I was cooler. My parents suspected a thyroid disorder, but I didn't have many of the other symptoms related to thyroid problems.
I had some other issues too. I have pale skin, hair, and eyes, and my red-headed grandfather has had cancerous skin lesions removed in the past. I had a few moles removed as a child too - moles that were acting suspiciously cancerous. The moles turned out to be benign, but it was yet another skin concern from my youth.
Finally, a diagnosis!
Even with flaky dry skin covered with little red bumps, I managed to find and marry the man of my dreams. We eventually decided to expand our little family, and I became pregnant. During my pregnancy my skin started acting a bit weird (weirder than usual). A bunch of new, strange looking moles started popping up in patches on my torso and on my arm, so I decided I would go to a dermatologist as soon as the baby was born.
As soon as the dermatologist saw me, she started rattling off the skin conditions I was afflicted with and explaining the symptoms of each. I was amazed! Here I had gone my whole life asking my doctors about my skin, begging for some answers, and this woman knew what was wrong without me having to say a word!
Ichthyosis Vulgaris
Ichthyosis is actually a family of genetic skin diseases that cause the skin to build up and scale. "Ichthy" is the Greek root word for fish -- the disease is so-named because the flaking skin resembles fish scales. Sometimes the disease is referred to in medical journals as "fish skin disease".
Normal skin is always renewing itself, dying and shedding in microscopic bits so that you don't even know it is happening. With ichthyosis the cycle is unbalanced, and the skin builds up. In some forms of ichthyosis the skin is regenerated so quickly it cannot shed fast enough. In other types of ichthyosis (including the one I have) the cells reproduce normally but don't shed as quickly as they should.
It is estimated that there are over 20 different varieties of Ichthyosis, which range widely in symptoms and severity. Luckily for me, I have the most common and mild form, Ichthyosis Vulgaris ("vulgaris" is Latin for "common" or "usual").
Symptoms of Ichthyosis Vulgaris
I have many of the classic symptoms. My skin feels dry and forms fine, flat, white scales. The scaling is most problematic on my torso, arms, and legs (the skin on my face is dry, but doesn't scale).
Keratosis Pilaris, the term for those red bumps I have on my arms and legs, is another classic symptom. Because my skin does not shed normally, it plugs my hair follicles, forming those red bumps that have caused me so much embarrassment throughout my life. These bumps only occur on my arms and legs (not my torso or face).
The inability to sweat or sweat properly is a symptom of many types of ichthyosis, but not necessarily Ichthyosis Vulgaris. This leads me to believe that I have a more severe case than many. Because of my clogged pores, the sweat cannot get to the outer layer of my skin to cool it.
Over 50% of people afflicted with Ichthyosis Vulgaris also have allergies -- usually nasal, asthma, or eczema. I do not have those types of allergies, but I was allergic to the sun as a child.
A symptom that I have that I was always curious about -- I have extra lines or skin-creases on my palms. I envisioned going to a palm reader and asking him/her to give me a reading -- surely mine have more information than the average palm! I was so surprised to find that the extra lines (termed "Hyperlinear palms"), are a sign of ichthyosis and keratosis pilaris. I had never associated those lines with any of my skin problems.
One symptom that I do not have is excessive body odor (probably because I don't sweat anyway). This symptom occurs when the spaces under and between the skin flakes harbor bacteria or fungus. I feel quite lucky that I have managed to avoid this symptom.
How does one get it?
You can't "catch" ichthyosis. It is caused by a genetic defect (either by a gene that mutates or through family inheritance). It is present at birth, even though the symptoms may not be visible yet.
I don't believe any of my family members have ichthyosis, (although some have fair skin and normal dry skin), thus I suppose you could call it a "birth defect" for me. Unfortunately, I appear to have passed it on to my son (he has dry skin and extra lines on his palms). Ichthyosis Vulgaris is autosomal dominant, which basically means you have a 50% chance of passing it on to offspring -- my son was unlucky.
Is there a cure? Treatment?
Unfortunately, since this is a genetic disease there is no "cure". You are born with it and you cannot get rid of it.
Depending upon the severity of the disease, some people can treat their ichthyosis with drugstore lotions. Obviously I could not.
The most effective treatment for ichthyosis is to use an acid-based lotion. Alpha-hydroxy acids are effective at eating away the skin (or keeping it from adhering).
My wonderful dermatologist gave me an acid-based prescription lotion that has performed miracles on my skin! Lac-Hydrin 12% is the brand name, Ammonium Lactate Cream 12% is the generic version. It contains 12% lactic acid, and it is a real blessing in my life. After using the lotion for 3 weeks, I had "normal" skin (note: there was almost no difference until I had been using it for 2 weeks). Just thinking about it makes my eyes tear up a bit. Gone are those nasty red bumps. I can run my hand down my arms and legs and feel nothing but smooth, healthy skin. I can wear a dress without panty hose because I'm proud of the skin on my legs. I can wear a sleeveless shirt without having people wonder what's wrong with my skin.
Of course the cream isn't without its faults. It makes one even more sensitive to the sun, and I was already plenty sensitive to begin with. You also cannot use the lotion (at least not to the degree I need to use it) if you are pregnant or nursing. It shouldn't be used on children under 12 years of age. Some people react badly to the lotion, which can cause burning and irritation.
A non-prescription version of Lac-Hydrin is available (containing 5% rather than the prescription version's 12% lactic acid), and may work well enough for some people with keratosis pilaris and/or ichthyosis.
Final Thoughts:
Looking back now I'm somewhat annoyed that a doctor didn't put 2 and 2 together when I was a child. I have what I now consider to be "classic" symptoms of Ichthyosis Vulgaris, so why didn't my pediatrician or general practitioner see a connection? Why didn't they tell me to see a dermatologist?
I cannot describe how wonderful it was to finally KNOW what was wrong with my skin. Even before I could begin treatment (I couldn't use the lotion until my son was weaned from breastfeeding), I was extremely happy to know the names of my conditions, to be able to research them, and to find out that there were other people with skin just like mine. I was downright giddy with the knowledge.
It was weird coming to terms with the fact that I have a "disease"! A genetic abnormality. And worst of all, I've passed it on to my child. That being said, at least with my son I will know how to combat the problems, and will help to build the self-esteem I was lacking as a teen.
If I had to pick a disease to be afflicted with, this would probably be the one I would choose. It doesn't cause me much discomfort, and it certainly isn't fatal. It is just a minor annoyance that can be dealt with. I just wish that I had visited a dermatologist sooner. I had some real self-esteem issues as a teen, and know that it would have helped me a great deal back then.
My advice to anyone with odd conditions -- get to a doctor! If I hadn't had a different, unrelated skin problem giving me a cancer scare, I would have never known about ichthyosis at all! If your normal doctor cannot provide sufficient help, go to a specialist. Odd things that you don't think are connected in any way may be the symptoms of a disease or malady you didn't even know about, and may be the clues to getting a treatment that works! I hate going to the doctor as much as anyone, but I really wish I had made my mother take me to a dermatologist when I was a teen. It is sooooo nice to have "normal" skin.
For more information on Ichthyosis & Lac-Hydrin, see:
Ichthyosis Information: http://www.ichthyosis.com/
Foundation for Ichthyosis: http://www.scalyskin.org/
Good Overview of Ichthyosis: http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10173.html
A fact-sheet on Lac-Hydrin 12% lotion: http://www.inhousepharmacy.com/skin-care/lac-hydrin-information.html
 |
|
|
|
|
|
|
Epinions.com ID:
mizgnomer
|
 - Top 50 |
|
Location: Tennessee
Reviews written: 306
Trusted by: 204 members
About Me:
Don't meddle in the affairs of dragons, for you're crunchy and taste good with ketchup
|
|
|
© 1999-2009 Shopping.com, Inc.