11122014: Skin allergy

My finger tips are peeling very badly. They weren't this sensitive until early this year. Each time I lay my hands on soap which are not baby friendly or non organic, they will start peeling. Washing detergent (for dishes and clothes) are worst. Even when not direct contact, touching the clothes after they are tumbled dried also caused the peeling.

There were times when I lost my sense of touch or they became so sensitive to touch. When it peels, the tips become reddish and the areas are protected by only thin layer of skin, I find it painful to even button up my shirt/pants or opening containers. When the new layer of skin grows, the peels become hard and made it difficult to feel textures.

I was requested for my thumb prints for my IC and driving license renewal. But due to this problem,my thumb prints cannot be detected by the machine. The conventional way using the stamp pad also resulted into thumb print which looked different all the time.

Hand creams and Dermal Therapy are not helping.  =.=

28112014: No more dermal therapy?

Hello there! So it was been months since I last updated. Skin condition is good, getting spots of eczema here and there probably due to the humidity (it's monsoon season over here). Or it could be the dryness due to the air conditioner since I started working (office based). That's how problematic it is, the weather cannot be too wet or too dry =.=

I tried avoiding medication but sometimes it bothers my sleep so I have to take sleeping pill (only once so far, touch wood) and use the Econazine cream when the breakout is really bad. I heard that these skin cream has thinning effects (I know my skin "grow" or shed faster than normal) but I am not going to risk it :)

Back in March I wrote about Dermal Therapy Alpha Hydroxy Lotion (link here). So after I finished that bottle, which arrived in a month using "not trackable surface mail small packet" shipping method, I ordered another 1 bottle. I did ask my readers to purchase in bulk but I was unemployed so I can only afford one at that time >_<

It was a terrible mistake that I ordered only when my first bottle was finishing. This time it took 2 months!! And for 2 months I had to use my St.Ives, which was quite torturous. I was back to using long pants and long sleeves, I really avoided shorts, skirts and dresses. It is important to understand that there is no cure for Ichthyosis, there are only relieve methods and ways to reduce the side effects. So when I stopped using the lotion, my skin was back to its dry-state.

Now, there is another very terrible horrible news (for Malaysians at least). The Dermal Therapy Alpha Hydroxy Lotion is against the Malaysia's law. The reason for the additional 1 month delay was because the lotion was on hold by the custom officers. I was issued a warning letter as I attached below:

I understand that there are many unregistered cosmetics being brought into Malaysia but continued to being widely used in Malaysia. This lotion is probably the only thing which really work for many of us suffering from Ichthyosis Vulgaris. Since the lotion is created specifically to treat Ichthyosis, I have not feel any side effects from it. I, however, have never requested for my family or friends without Ichthyosis to try the lotion so I am unsure how will it effect people without Ichthyosis.

I have used a quarter of my second bottle and now thinking on how can I get the lotion in future. I need opinions on whether seeing a skin specialist help? Can I request for a specialist prescription? How if the specialist will not help? (Or not even know about Ichthyosis, like those I seek for at Government hospital years ago) And seeing specialist means more money to be spent T____T

Quite frustrated as well because not only the doctors were not able to diagnose my skin problem (read here), even prescribed me with the wrong medicine (which worsen the condition) and now they want to stop me from using the only thing which works for me wtf

11032014: Dermal Therapy's Alpha Hydroxy Lotion

I received a few comments and emails regarding the "miracle lotion" on Ichthyosis forum. 

The miracle lotion here is Dermal Therapy's Alpha Hydroxy Lotion 

which can be bought from https://www.dermaltherapy.com/. 

This product is formulated specially for Ichthyosis skin type with high content of 

Urea and Lactic Acid which helps the skin to shed.

Previously I found a friend in Malaysia who is also suffering from Ichthyosis who asked whether any Malaysian wants to order the lotion with her in bulk to save on postage. However at that moment I just bought a new big bottle of St.Ives and figured I will order only after I finish my St.Ives. So she ordered without me. After I finished my St.Ives, I figured it is really time to give this one a try, so I went ahead to get a bottle. Only one as I was afraid that it may not suit my skin as some user said they dislike the strong smell of urea.

For 1 bottle that I ordered, I was given the option to choose between postage with tracking and without tracking. Obviously the postage without tracking is cheaper than those with tracking. So I asked my friend who has experienced buying the product. She said she used the postage without tracking twice and never lost the product, they all arrived safely...so fingers crossed!

Here are the emails I received after placing my order:

First you will receive your order summary in your shopping chart. One bottle of 16 oz. is $25. 

I didn't try if I order more than one whether the shipping & handling will be reduced but I think it will.

Second you will receive another email for shipping out of Canada/US. Other types of shipping are more expensive the the lotion itself T_____T so I chose the not trackable surface mail small packet after hearing the review from fellow Ichthyosis friend. After that it depends on luck, I waited for almost 4 weeks (a month). I was really worried it will be lost and there is no way for me to ever track it. But in fact it arrived early! 12 weeks can be a devastating wait. When it arrived, I was so happy!

So in total for one bottle I paid $25+$8+$18.13=$51.13. That is like RM167.65 based on today's exchange rate. It shouldn't be much different on other days except if there is a major change in the exchange rate. Based on what our Ichthyosis friend said, one bottle could last 2-3 months.

Buying in bulk will definitely be cheaper because you will be saving on shipping. For example if you buy 2-3, the not trackable shipping will be only few dollars additional, around $25.

The package arrived safely!

And so securely wrapped up in bubble wraps!

Here is the lotion! and free samples~

They gave 4 packets of best-selling Dermal Therapy Heel Care cream samples.

Haven't use them cause I don't have cracked heels but gave them to my brother :)

Regarding the lotion, Awesome!! It really is a miracle lotion. I used it in Malaysia and not greasy at all! But my Mum did complaint about the urea smell. So after using the lotion, I topped it with nice-smelling baby lotion :) I recently went to Hong Kong which has Spring temperature, I didn't scrub for a week and I can still barely see flakes! Now I can confidently wear shorts and skirts in public, am so thankful for this miracle lotion.

However since it is quite pricey to be bought individually, especially the shipping, I hope in future fellow Malaysians suffering from Ichthyosis can share the shipping fee! Feel free to drop me an email at meilinxo(at)gmail(dot)com or using the "contact me" box on the right sidebar if you are interested to share shipping with us! :)

08022014: Does shaving helps the skin shed?

Hello! Back from (Chinese New Year) CNY holidays~

So during CNY we wear new pretty and new clothes, naturally as a lady I would love to wear skirts and dresses, not to mention Cheongsam (traditional Chinese dress)!

I don't have really hairy body, meaning I rarely shave because it's unnecessary, plus I wear long jeans or leggings most of the time. 

Once in a while when I want to wear dress or skirt I will shave/wax my legs and one thing I found out, everytime after I did that, my skin is super smooth!

I told my Mum about it and she said maybe because I cleared the hair follicles and makes the skin shedding easier. But of course I can't shave everyday, not only it is time consuming but it actually grows kinda slow. No point of shaving if there is nothing right? So after a week or 2 after shaving, it goes back to square one. Rough and cracked skin.

So just wanna share on how different it looks like before and after shaving.

These were taken under the same lighting of my room.

The "Before" is before I shave my legs, hair is fine so not quite visible but you can still slightly see.

"After" is a day after I got them shaved! 

The "After" photo probably looks brighter because of angle and because my skin is brighter!! :)

There is a patch of darker pigmented area as you can see at the center.

I had been scrubbing this part like mad, lightened a bit but I think it is some stubborn dead skin >_<

So after I shaved, I went out visiting in my favourite skater mini skirt!

But there was still slight insecurity, I avoid bright places just so I can hide my skin a lil.

But still, if you have an emergency, try shaving and slab on lots of hydrating lotion.

You might get smooth skin for at least 3 days!

Sufficient for me, at least, to wear skirts and dresses out~

24012014: IV in tropical countries

I guess because we live in a humid tropical country many wouldn't have thought that people here could be affected by Ichthyosis Vulgaris as well. Of course without the dry winter, it is much better here. However just like during summer, the whole year of sun caused side effects as well. 

Due to the sun, the skin sweat, though not as much as normal-skin people, it causes itchiness and rashes. The heat burns the skin, causing redness and peeling. I read that many think their skin got better after they go under the sun for a while, but here in Malaysia, I don't think going under the sun will be a good idea.

The sun doesn't come with a chilly breeze, just stingy extremely hot sun which might cause skin cancer, unnecessary tans or any other skin disorders.

In fact I have found some people with Ichthyosis Vulgaris in Malaysia! It is of course not an active topic, we don't even have proper care for it and doctors don't even know what is wrong with us. After I wrote a post on my personal blog, one of my friend read it and told me "ooooh now I know what is wrong with me, now I know the name of my skin disorder". Then I was looking for Ichthyosis Vulgaris creams selling in Malaysia and bumped into a girl through a forum who has Ichthyosis Vulgaris, but apparently there are only two of us with such disorder in the forum because no one replied haha~

So there, besides my Dad and my brother who has Ichthyosis Vulgaris, I just found 2 other Malaysians having Ichthyosis Vulgaris. Not so bad, I had always been sad because I am the only girl affected in the family, and you know how important is the skin to a female. Thus I believe there are many other like me even in Indonesia, Thailand or Singapore, just that our conditions might defer from these living in seasonal countries.

Of course we feel grateful but we still feel different and uncomfortable. I hope we can open up and learn that this genetic disorder is not any of our mistakes but it is God probably trying to make us unique.

22012014: handling eczema

Since I have developed some mild Eczema due to my Ichthyosis Vulgaris, I tried all kinds of cream to reduce the rashes, dryness and itchiness. Some provided by the doctors, even skin specialists, caused more itchiness and spreading rashes. I found this cream the most effective for me, and it is very cheap, only RM5 for the 10g and I think RM8 for the 20g tube. The 10g tube can last me for a month during normal breakout because it only takes a few days to reduce the redness and itch.

It is called "Econazine" cream, I am not sure how I found out about it since I had been using it for over 5 years now. Probably just a day when I had Eczema and my parents dropped me at some pharmacy and the pharmacist just introduced me to this cream. 

This is how the Econazine creams look like. They have the 10g and 20g tubes, I usually bring the 10g for traveling and get a few 20g to keep at home. As written, the cream is actually for antifungal and anti-inflammatory use. It is also written for infective eczema, which is probably my case because this works wonders! 

This is able to reduce my Eczema in over a night. I applied before bed and when I'm awake, tadaaa the redness reduced so much. To fully cure the eczema, I have to apply twice a day for at least 3 days (small affected area). If I apply this quickly when the symptoms come, it wouldn't develop to something worst.

For those having Eczema, there is no harm trying this cream, it is only RM5 after all...that is like 1.5USD?? It is however a controlled medicine so make sure you get it from a licensed pharmacy or clinic :)

Good news! I ordered AHA Lotion from Dermal Therapy but it will take around 3 weeks to arrive in Malaysia boohooo~ Anyways, I am excited and will do a pictorial review once it arrives! I heard many  positive stories about how effective it is for Ichthyosis Vulgaris and also normal dry skin.

19012014: soap and lotion

This is my first post for my "Coping with Ichthyosis" diary. I am diagnosed (by myself because non of the doctors I went to knew what was wrong, read My Story) with Ichthyosis Vulgaris.

Because of this (exposing myself) I might never find a boyfriend and get married Lol joking I had 3 ex boyfriends (so don't worry so much about your appearances, none of them mind!) but would prefer single life at least for now. I would like to help those who are also suffering from Ichthyosis Vulgaris but mistakenly diagnosed as Eczema (like me), those who are too shy to admit (like me when I was younger, I avoided questions, now I just proudly say "I have Ichthyosis Vulgaris, go Google") and those who would like to know soothing remedies (it would also be best to read and join the forum on Ichthyosis.com).

After I knew I had Ichthyosis Vulgaris, I not only explain how and why my skin is such, people seem to be more considered. Not that I wanted the special treatment but they seem to understand if the area I sleep I covered with flakes, my table appear dusty even though it's just fine skin particles (ewww I know but I couldn't help it, it's nature doing it's job), and I unconsciously scratch myself at night while sleeping. My roommate of 5 years in university is admirably tolerant because even I feel annoyed that the floor on my side always feel sandy and dusty from the flakes.

Anyways, here will be the journey of my ups and downs coping with Ichthyosis Vulgaris and types of remedies I tried for my skin. There is no cure for Ichthyosis Vulgaris but we all try to minimize the itch, irritation and pain.

As of today, I am using the Johnson's Baby Milk Bath (other types of Baby baths didn't work) and St.Ives Hydrating Vitamin E lotion with scrubbing using coarse loofah.

The weather is pretty humid these days (I found molds growing on my one-week left aside backpack yikes!) so the flaking isn't that bad. Maybe except my back which is more difficult for me to scrub.

I also blogged about it on my personal blog 2 years ago when I discovered I have Ichthyosis Vulgaris
http://meilinxo.blogspot.com/2010/07/of-ichthyosis-vulgaris-and-me.html

The most frequently asked question is "why are your hands like that?" The top is like wrinkly (can be denied, I might be so hardworking washing dishes & cleaning the house Lol) but the palm is obviously not like a common person. These palms were what the trainee doctor was amazed with and he took out his camera right away, started taking pictures of my palms instead of inspecting me *sigh. I hope he finally found what is the disease and will one day find a cure =.= And these is a name for it, it's called "Hyperlinear Palm Wrinkles" 

Scaly leg and arm. I just applied lotion so the scales don't look so bad right now. Some other time you can see white flakes (you can see some on the arm) and just so scaly even if you stand 2-3 meters away you will notice.

No eczema rashes because it rained whole day, I just stayed home. But feet had been sensitive to dirty floor so we had been vacuuming and mopping alternate days. Even the slightest dust can cause itch. And sometimes I missed out the sole while applying lotion because I need to hurry so the sole crack on the lines.