Ichthyosis

...The dead you is constantly being rubbed away by the dead me. Your cells fall and flake away, fodder to dust mites and bed bugs. Your droppings support colonies of life that graze on skin and hair no longer wanted...

Jeanette Winterson, Written on the Body

My droppings are a little more noticeable/copious than those of most people.

When I was younger, I didn't even have a name for the condition. Open discussion from an early age might have been helpful.

I would like to attempt to explain about the effects having a condition like ichthyosis might have had on my social and even personality development, and how having ichthyosis has been one of the contributing factors regarding anxiety and depression.

Wikipedia:

There are many types of ichthyosis and an exact diagnosis may be difficult. Types of ichthyosis are classified by their appearance and their genetic cause. Ichthyoses caused by the same gene can vary considerably in severity and symptoms. Some ichthyoses don't appear to fit exactly into any one type. Also different genes can produce ichthyosis with similar symptoms.

What the different types of ichthyosis have in common is dry, flaky, rough, thick, scaly skin. There is an excessively rapid production of skin cells, and/or the exfoliation process is inhibited.

I have been looking around the internet for information regarding my skin, and have decided to put up a more detailed description regarding my skin and what the experience of living in it has been like over the years. On internet message boards and forums I have read the stories of others, their advice, their experiences, and their comments regarding different phases of life, social issues, treatments, and many other concerns.

While most of the messages are hopeful and positive, it is obvious that for most having ichthyosis has had no small impact on their lives. Those who fare best usually seem to have supportive families and long-term mates.

Ichthyosis Foundation (www.scalyskin.org):

Ichthyosis currently is classified on the basis of clinical appearance and inheritance pattern... This may change in the future, however, for several reasons. First, many individuals with ichthyosis are the first or only members of their family with ichthyosis; in those cases, inheritance pattern cannot be directly confirmed. Second, clinical appearance is not always a reliable indicator of the cause of the ichthyosis. For example, no two people with the same disease look quite the same. Disease severity can vary significantly among individuals who have been given the same diagnosis and who have mutations in the same gene. By contrast, some people whose ichthyosis looks very similar actually have mutations in different genes and, thus, the cause of their ichthyosis is different. Finally, some individuals have clinical features that do not permit easy assignment to existing categories or diagnoses. In the future, an individual's personal genetic makeup (their genetic diagnosis) will become increasingly important in the diagnosis, classification and prognostication for that individual.

My symptoms most resemble the most common type of ichthyosis: ichthyosis vulgaris. I have not undergone genetic testing. While my symptoms may have been mild in comparison to those of some who have rarer forms of ichthyosis, the condition has had a significant impact on my life. I don't think that I have a mild case of ichthyosis vulgaris. Two of my siblings also have ichthyosis, although the manifestation is not exactly the same in each of us. Growing up, and even as adults, we referred to our skin as 'dry skin' or just used the word skin in a pronounced way. One of my siblings was not affected. Both of my parents had somewhat dry skin, and one or both may have had a mild case of ichthyosis vulgaris. (Ichthyosis vulgaris affects approximately 1 in 250.)

I have exceptionally hyperlinear palms and rough soles. All of my skin is drier and scalier than normal skin, but it is worst on my legs, back and arms - on the legs and back especially, the scales were at some times of the year brown (I have seen this referred to as a mosaic pattern). When young it was very pronounced. I occasionally experienced cracking and even bleeding of my skin, but I think this was because I was young and did not yet understand the importance of constant care, and also did not have unlimited access to creams or lotions.

We were not coddled regarding our skin, nor excused from any responsibilities/activities. But, we did absorb a kind of shame about it that was so severe that all of us had perhaps a kind of paranoia about it. Our parents did not seek out answers, or to increase their knowledge, or if they did, they didn't pass anything on to us. Maybe the answers they themselves received were inconclusive, and they thought it was best to treat us as if we were normal.

I don't know at what age ichthyosis first appeared, but from the time we were very young, my siblings and I were often quite tan in photos. I think my mother discovered early on that summer and sun greatly improved the appearance of our skin. (In the childhood photos section of my website, it can be seen that I am tanned in every photo, and my hair has been bleached/lightened significantly by the sun as well - it is naturally a dark brown.)

I had to go first. I was the oldest, and the first with ichthyosis to go to school. I had to deal with Phys Ed first. I had to deal with more new schools than any other sibling - for example, in Grade 1 I attended three different schools. I was the first to take up pursuits like ballet and swimming lessons. I was the first to go to high school, and to show that it was possible to date, and have relationships.

It could be that my personality developed differently to how it would have developed if I had normal skin. Out of four, only one of us does not have ichthyosis. The brother who does not have ichthyosis is the one who is the most social, and the one who played and continues to play team sports.

In group activities, I developed a habit of making sure I was a certain distance away from others. It has only recently occurred to me the extent of influence this condition may have had on my life, and even on things like personality development, and the anxiety and depression that affected me as I became more sexually aware.

The year I started high school, my father took me to see a dermatologist. My hopes were high, but unrealistic. Unfortunately, not only did the dermatologist not have a cure for me, he also couldn't offer any advice for improving the condition of my skin above what I already did, and neither the dermatologist nor my parents gave the condition a name or encouraged discussion. I think this resulted in a persistent feeling of shame, and a continuance of my behaviours related to hiding my skin whenever possible. The 'depression' I began to be consciously aware of in high school may actually have come to my attention not long after the disappointing results experienced through seeing the dermatologist.

Until I moved to Australia, I also had keratosis pilaris on the backs of my arms and the front of my thighs (this condition has a red, goosebumpy appearance) throughout my life, except during summers when I had a suntan. I have read that keratosis pilaris may decrease or disappear after age 30, so it is difficult to make an accurate assessment of why it disappeared.

It is possible that over the years my propensity for long exercise sessions with much sweating could have been partly motivated (perhaps unconsciously) by a wish to improve my skin. My staying indoors (what others have thought of as agoraphobia) might have had at least a little to do with me noticing that my skin was better when I went outside less. Indoor heating in Canadian winters is not good for the condition, but combined with very cold outdoor temperatures it is considerably worse.

Some with ichthyosis experience trouble sweating normally, as sweat glands may be blocked by a buildup of unexfoliated skin, and as a result may experience overheating, or a prickly, itchy sensation. Throughout my life I have experienced the 'prickly itch' sensation (not as extremely as those with more extreme forms of ichthyosis), usually during times of year that are colder, but especially around (Canadian) autumn and spring (and Australian winter). In summer I can sweat normally, but around autumn or spring I may have trouble sweating with exercise unless I get my body hot enough to get past a certain hump - and usually at those times it is always uncomfortable starting out.

Online, I have seen shaving recommended as a way of removing dead skin (even for men). I had thought that shaving my legs improved the appearance of my skin. I hadn't realized that shaving in an overall sense might also help with the ability to perspire more normally.

As a child, during the summer I often stayed in the water all day when I had the opportunity, and this is another activity which may have aided in loosening up skin such that it could exfoliate.

In recent years in Australia we have had drought conditions and resulting water restrictions, and in response it has sometimes made me feel guilty to have long showers, although from what I have read online, many with ichthyosis have stated that long, hot showers or baths help with exfoliation. I had always thought that too much showering or too hot water was bad for dry skin, but my own experience had been that showering more, not less, improved the appearance of my skin, and that hot water helps with exfoliation.

I have also always rubbed my skin in the shower in order to try to remove some extra skin, face as well as body, thinking this wasn't good for me but that it worked better than anything else - and I recently read online that there are others with ichthyosis that recommend such rubbing. I have at times rubbed myself raw with (non- natural) pumice stone, only recently discovering that others with ichthyosis have made similar attempts to deal with exfoliation.

In Australia, my skin improved, and I have written before that it is now 'normal enough', but I oversimplified. For the first years I lived here, I continued to suntan. Since I have now not had a tan in 7 years, I think it's possible that the sun does make a difference, and in addition the colour adds to the impression of smoothing out the overall appearance, making it more consistent. I also think that vigorous exercise, in which much perspiration occurs, is also important for the skin, and the longer the session that can be maintained, the better for the skin. As I age, it is not as realistic for me to engage in such sessions.

In recent years, I have found that I am having more problems with my skin, especially with a kind of constant shedding, and a few troublesome dry/flaky areas. I am very fond of Melbourne, but it seems that the problem is worse there. Most of my time has been spent in Brisbane, which may not be as ideal as more tropical parts of Australia, but may be more temperate and livable. As I age, I am more reluctant to constantly expose flesh, and the idea of living somewhere it is natural to always wear summer clothing is not something I am comfortable with. It could be related to aging, alcohol and caffeine consumption, ongoing drought conditions, showering only every other day, or a combination of all of these. It could also be related to never lying in the sun, although I have wondered if regular saunas might be something of a replacement for tanning - at least as far as helping with exfoliation. In addition, those with ichthyosis may find that their skin ages more quickly than the skin of those without, and that it is less elastic.

After I shower, I do a layering process with baby oil first and then lotion/cream. The cream I used is Woolworth's Home Brand Sorbolene Cream with 10% glycerin. I also use this to moisturize my face. It is very inexpensive at $2.49 - $2.99 for 500 ml (pictured at the top left of this article - the photo can be clicked in order to enlarge, or the link in this paragraph can be clicked). Most sorbolene creams have a bit of a chemical smell to them which I find unpleasant - this particular one does not. It seems as unscented as it is possible to be. It can also be used as a soap substitute, and does not irritate my eyes. I have not yet found a descaling lotion. [Note as of 2016: I now use Dermal Therapy's Alpha Hydroxy lotion with 10% lactic acid and 10% urea as a daily body moisturizer. There's much less greasiness, my skin exfoliates better, and I think it might also remove seborrhoeic keratoses. I continue to use sorbolene on my face.]

I have heard that many women with ichthyosis experience signs of facial aging earlier than normal. In my case, in addition to ichthyosis, I also have an oily face and scalp. My facial skin is much easier to exfoliate than my body skin, but I do have to put effort into it, and deal with it frequently. For most people, exfoliation occurs much more naturally, unconsciously. I only use the cream fully on my face in winter - the rest of the year, when it is warmer, I will use it only on a couple of dry places, or will first rub it between my hands to thin it, or even add a bit of water or apply only a minimal amount to damp skin. (Also, I use Face of Australia's Lasting Looks Natural Foundation, which costs about $12- 13 AU for 40 ml and has a moisturizing effect. In using it I don't have the problem I have with most foundations - the foundation doesn't settle in such a way as to emphasize dry areas.)

I have no patience for facial moisturizers which require you to use an additional moisturizer for the 'delicate eye area', and I do not want to worry that the cream I use for my hands will make my eyes sting if I rub them accidentally. Using one cream for everything is practical. I once tried Olay's Total Effects (online on sale, it is $29.99 AU for 50 ml), a facial moisturizer which does require you to use an additional eye moisturizer, and I actually preferred the much cheaper Woolworth's cream.

Yes, I am high maintenance. It takes me longer than most people to get ready. Exfoliation and moisturization are always issues, shaving helps with exfoliation, and longer showers help to loosen up skin so that it can be removed. Even if I've already showered, if I face a situation in which sex might be an issue, or even if making out might be an issue, I will need to check myself for flaky areas, since all the previous preparation does not prevent them from showing up later. I also have to check bedding, floors, and furniture, because they may be covered in flakes, which are certainly not 'sexy'. In addition to that, there is a balancing act when it comes to moisturizing, and I may feel greasy in my clothes for a while after dressing, and want to wait a while until I feel less greasy.

While still a teen, I knew all about the 'subterfuges' of middle-aged women: soft lighting, alcohol or drugs, taking control of a situation in various ways to avoid my partner having too much awareness of my flaws, but mostly I was the least inhibited during summer months when my skin appeared the most normal.

When summer arrived, there would first be a period of a few weeks in which I concentrated on getting a tan. I found it worked best for me if I used a moisturizer before lying out, and if it was hot enough for me to sweat considerably while tanning. I would be careful not to burn, as peeling would interfere significantly with the ultimate evenness, or slow down the rate at which I could achieve a more 'normal' appearance. When young, I think my mother just took us some place where we could alternate between swimming and being out in the sun for most of the day. I was lucky enough to have a skin type that did not burn easily. As a teen, I also discovered that for me the sun helped with acne, and made my facial skintone appear more even.

As an adult, I encountered attitudes toward suntanning which contributed to self-consciousness. As my experiences had caused me to be drawn to 'alternative' ideas and ways of life, I found that certain people I came into contact with, (for example those with a Goth appearance) might find it difficult to understand why anyone would want to tan. Also, as information about the long-term effects of sun exposure became more prominent, I did find that many people openly expressed a kind of disdain for those who would continue to tan.

On the plus side, because of the rapid production of skin cells, it may be that I scar less than most people. This may affect everything from my previous cutting/self-harm history, to marks on the hands and knuckles forming due to bulimia, to the effects of bad sunburns, not to mention various childhood injuries.

See also: I Have Alligator Skin, from my current Comments section, and uncomfortable in my own skin, from my obxesceion website.

[2015 update]