Friday, July 2, 2010

Of Ichthyosis vulgaris and me

Let's start this whole new story of me, and my skin.

It all started when I was a young baby at few months old. Being the first child in the family, my Mum was not experienced taking care of a child. She bathe me using adult soap, which my Dad later blamed her for my skin condition. However, later on we found out that it's a kind of disease I inherit from my family. My Dad has this Ichthyosis, I think which is kinda bad cause as a guy he doesn't really bother about his skin condition. Me and my second brother inherited this disease from my Dad. My youngest brother have perfect skin like my Mum. Add on to the case that my Mum used adult soap on me when I was a baby, my skin condition worsened. It was all dry and scaly. I went to hospitals, government and private. Spent whole lots on consultant fee and medication. My uncles and my Dad's friends would bring all kinds of creams from overseas, not available in Malaysia for me to try on. I used almost all the lotions in the Malaysia market, from the cheap stuffs to the most expensive ones. From skin moisturizing to skin repair. Up till now, I have not found the perfect one. When I was 10 years old, my family went on a trip to Miri, a small town back then in Sarawak. the weather was so warm and my skin condition got worst. There were rashes everywhere, I had to stay in a air conditioned room whole day. I had blisters all over my body as well. Dad took me to a skin specialist and I had my blood sample taken. Ya, it was that bad until they have to examine my blood to find the best cure. The doctor gave me a cream but it was only temporary relieve. After we got back to Kuching, I went to see skin specialist and go for regular check up every 3 months, until I was in form 4. I was given sleeping pills because during those school days I can only sleep with them when rashes appeared. I was so shy when I was in primary school that I wore those ballet socks whenever I go out, even though I have never took ballet. In secondary school, I started to accept the fact that I am different. Whenever people ask bout my skin, I tell them the truth. Before that, I always avoided the question. When I was in form 5, I learnt that my aunts from my Mum's side also have the same problem. Making things worst because now I know I inherited it from both sides of my parents. There was once during a visit to the skin specialist that a trainee doctor took the pictures of my palms. Indeed my palms are different. The lines are obvious and they wrinkle like an elderly women since I was 7 or 8. My feet are really sensitive. If the floor is dirty, rashes will form within hours. My brother face the same problem, there was once he was sensitive to his own sweat. When he was in early secondary school, his rashes were so bad that he had to wear long sleeves all day even in Malaysia tropical weather. Up till now, I am still looking for the best cure for my skin. However, they said this disease get better when we are older, but there is no cure. So far St.Ives intensive healing serves me good. When lady gaga said she cannot survive without heels and fake eye lashes, I can't without lotion. I had been trained to apply them after bath. Everyday for as long as I live. If I go travelling and forgotten them, I go miserable. And I will stop at whatever shop to grab any lotion. When you see those scaly skin, I am sure it reminds you of snake or crocodile. It is in fact called the crocodile skin disease at times. I used to be teased by boys and I thought I will never find a guy who would date a girl with scaly skin. I envy those with smooth silky skin, like my youngest brother. Why me, the only girl yet having the worst skin condition in the family? I used to wonder but time flies. Me and my younger brother have this skin changing period every once in a month like snakes, seriously. That is when we scrub our body like hell. Or else you can write on our skin. It felt so shitty that I need to deal with the painful menstruation and skin changing every once in a month, but I got used to it. During the good times, I do wear shorts. But other time, I go myself all covered with long pants and cardigans. The thing is, Ichthyosis is not like other dry skin. If any of you thinking applying petroleum jelly all over your skin makes it super duper oily and greasy, it is actually making the skin dryer for us suffering from Ichthyosis. Any of you readers out there facing the same disease, you are so welcome to suggest any treatments. Since till now none of the commercial brands really works, most people with Ichthyosis make our own lotion. I do when I have time, and it works wonders. I never knew I was having Ichthyosis vulgaris. The doctors thought I was too young to know, some didn't even know what disease I was having because it is so rare. I did my own reasearch on it. My Dad did as well perhaps because we wanted a cure to those sleepless nights. The truth is, no matter how I try, it is in my blood, it is genetic. Just hopefully people understand, and please I am different but I wish not to be treated differently :)
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Facts on Ichthyosis Vulgaris :

Ichthyosis vulgaris is a skin disorder causing dry, scaly skin. It is the most common form of ichthyosis,[1]:486 affecting around 1 in 250 people.[2] For this reason it is known as common ichthyosis. It is usually an autosomal dominant inherited disease (often associated with filaggrin), although a rare non-heritable version called acquired ichthyosis exists.[3]:560

The symptoms of the inherited form of ichthyosis vulgaris are not usually present at birth but generally develop between 3 months and 5 years of age.[4][5] The symptoms will often improve with age, although they may grow more severe again in old age.[6]

The condition is not life-threatening; the impact on the patient, if it's a mild case, is generally restricted to mild itching and the social impact of having skin with an unusual appearance. People afflicted with mild cases have symptoms that include scaly patches on the shins, fine white scales on the forearms and upper arms, and rough palms. People with the mildest cases have no symptoms other than faint, tell-tale "mosaic lines" between the Achilles tendons and the calf muscles.

Severe cases, although rare, do exist. Severe cases entail the build up of scales everywhere, with areas of the body that have a concentration of sweat glands being least affected. Areas where the skin rubs against each other, such as the armpits, the groin, and the "folded" areas of the elbow and knees, are less affected. When the build up of scales is bad, the person with a severe case suffers from "prickly itch" when he or she needs to sweat but cannot because of the scales. Various topical treatments are available to "exfoliate" the scales. These include lotions that contain alpha-hydroxy acids.

Ichthyosis vulgaris is one of the most common genetic disorders caused by a single gene.[4] The disorder is believed to be caused by mutations to the gene encoding profilaggrin (a protein which is converted to filaggrin which plays a vital role in the structure of the skin).[8] Around 10% of the population have some detrimental mutations to the profilaggrin gene that is also linked to atopic dermatitis (another skin disorder that is often present with ichthyosis vulgaris).[5] The exact mutation is only known for some cases of ichthyosis vulgaris.[4]
It is generally considered to be an autosomal dominant condition, i.e., a single genetic mutation causes the disease and an affected person has a 50% chance of passing the condition on to their child. There is some research indicating it may be semi-dominant. This means that a single mutation would cause a mild case of ichthyosis vulgaris and mutations to both copies of the gene would produce a more severe case.[8]



And for those who face the same disease, can check out http://www.ichthyosis.com/
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Wanna see some photos on Ichthyosis? Not for the weak hearted.
My skin was once like that, it still gets there sometimes but I learned to control.
These are all the most common type of Ichthyosis, called Ichthyosis vulgaris. If you are to search on google images, you would totally freak out cause there are other types which occurs 1-3 in millions and are much more scary.
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9 comments:

syahmijasrin said...

woah...
u just posted the one that i've been looking for...
i guess i was having those before...
well my mom said that my body was like fully scaled...
and i was called 'ular' b4 for being so scaly...haha

MayLin :: Melinda said...

syahmi : I just found out recently about the disease too. before this I thought it's eczema cause eczema is more common. but then I saw the pics kinda diff with my condition. so I did some research and even joined a forum at ichthyosis.com...hahaha

syahmijasrin said...

ahaha...woah so smngt...haha...
bagus2...i guess i still now got this one...
well,when it is cold like i was exposed to the aircond...
my skin still got dried up and looked scaly...haha...
oh thanks a lot btw...

Anonymous said...

I also have ichthyosis, as well as my dad and brother. I've tried a few things that seem to work ok.

So someone posted something on ichthyosis.com about using sking bandages - it takes off the dry skin and leaves the remaining skin smooth. I used duct tape - it is relatively large so it can cover a significant portion, also because it completely covers the skin, it entraps the moisture. I usually keep it on overnight and take a bath in the evening the next day.
My skin is very very very smooth after using it.

The only thing I am not sure of, is if the adhesive is potentially toxic. I know that some physicians will leave bandages on for over a week, but I am not sure about the type of adhesive in duct tape. It seems to work, that being said I still don't use it every day - although I probably should.

I would appreciate to know if this works at all.

sabrina said...

I have Ichthyosis vulgaris as well. I was told as a child it was "kid bumps" and would go away when I was grown. That did not happen. Any lotion can make you feel better for a short time, but they won't change how your skin looks and feels. You need to get the extra skin off sothe best lotions are going to be ones with exfoliants in them like lactic acid (alpah hydroxy acids). The brands I know and use are AM Lactin, LacHydrin, and 12% Moist Skin. All of these have 12% lactic acid and if used 2 times a day work well to keep off the flaky skin. If your skin doesn't respond to that you can try to get one with a higher % of exfoliant from a doctor. If you can't find any of those lotions there is also an online company "paula's choice" that has both alpha hydroxy and beta hydroxy lotions (beta is better if you also suffer from bumps and pimples). Hope this information helps!

jo said...

Omgosh, I finally found the reason to my skin condition. For me, I have really wrinkly hands, and I'm only 18. I feel so self concious when people notice my hands because they're that bad :( Is there any way to make it better? Lotion helps temporarily, but not a lot :(

Anonymous said...

Hi! I know u published this long time ago, but I read it now. And if somehow 'till now u didn't find out about substance in lotions that gives great results for this skin condition, I'm telling u that u shoud look for UREA in lotiones. They contain as much as 10% urea. I found about this from my dermatologist and I'm useing it for few years now and it really made a difference ... at least for me. I hope I helped u a little bit.

Anonymous said...

Get the 10% Urea lotions like Eucerin - absolutely great results

Naturalherbs Solutions said...

The best way for Treatment of Ichthyosis is to soak the skin in lukewarm water and then slather your still damp skin with a cream moisturizer. You can add epsom salts or add moisturizers like colloidal oatmeal to your bath; salts and moisturizers help your skin absorb the water and lock in the moisture more successfully.