My Story

It's 2014 and I will be turning 24 soon. I'm not sure when I was diagnosed with Ichthyosis Vulgaris, in fact I was probably never diagnosed officially with it because none of the doctors knew what was wrong with me. Either the medical knowledge was really slacking or maybe it is really a rare disease in Malaysia, a hot climate country.

When I was around 7 years old, I first entered school and realized I was different. That was probably when it started showing because I realized my skin was perfectly silky smooth when I was born. I think it was in 1999 or was it year 2000, I had the worst break out. I was travelling with my family and the weather was exceptionally warm, added with the environment change, I had rashes all over my body. I remembered it stings so bad that I cried and wasn't able to sleep at night. My parents brought me to the clinic but the doctor didn't know what is wrong with me, he took my blood (that was my first blood test), and gave me sleeping pills.

After the vacation, my parents brought me to the skin specialist at the General Hospital. I was too young to know what sickness or disease I was diagnosed with, I only remembered I was given tubs of medicines and lotions. Shower cream and some Vaseline looking gel is what I remembered most. They didn't cure me, but I guess they didn't make my skin worst. I had regular appointment with the skin specialist twice a year for at least 7 years till I finished High school. It didn't get worst but didn't actually help too.

During high school I was very self conscious, I would really prefer to have my body covered up and only showing my unaffected face, I wore Winter fashion even in tropical Malaysia. The last time I had my appointed at a skin specialist, my regular doctor wasn't around and they had a young new doctor to inspect me. He was really surprised to see my skin. Instead of telling me what is my disease, he took his camera out and requested for some photos of my wrinkly palms and scaly legs. I got really upset because no one knew what was wrong. 

My parents told me I had Eczema, which I think was told by the doctors. I read online that many were told that they had Eczema too. It is true that Eczema comes with Ichthyosis, but to me it felt more like when the cracks from the Ichthyosis get too bad, it caused Eczema, so the medicine wasn't curing the root of the problem. I also read that using oil will worsen Ichthyosis Vulgaris (am not sure about other types), which is true for me. There were times when I ran out of cream/lotion so I used baby oil but it only makes me itch more and makes me start scratching.

When I entered university, frustrated that the doctors weren't able to know what was wrong with me even after almost 10 years, I was determine to find out what is wrong with me. 3 years back, through my own research online and books, I found out my symptoms are very close to Ichthyosis Vulgaris. I had scales on my legs and arms, as I grow older, it got worst, which is true from what an article I read. I never had allergy on my fingers, but at 21, the skin on my fingertips started peeling, on all kind of soap and shower foam except Baby milk bath. I had to use gloves when doing the dishes and washing the clothes.

Till today, there are certain food which will trigger the itch. I avoid too much eggs, seafood and animals inner (like intestines, gizzard and liver). If I start itching non stop at night, I still need sleeping pills else I will either not sleep all night busy scratching or wake up with mystery (unknowingly dream scratching) scratches in the morning.

I tried all the counter lotion brands and non worked because normal skin people, even just slightly dry would prefer something not sticky and refreshing. However for Ichthyosis Vulgaris, we need something more creamy and thick. I also tried many overseas brand from US and Germany introduced by my parents' friends but didn't work either. Until I found Ichthyosis.com and learned so many from people facing similar problems. Not all cure for one works for another so I had been experimenting. My brother is also a patient of Ichthyosis Vulgaris, he introduced me to St.Ives Vitamin E so I had been using that since. For me it is enough for my daytime outing because I cover up a lot, only using jeans/leggings, no dress or skirts.

The first time I traveled to a seasonal country, South Korea during mid Autumn, I suffered much which is why I understand why many Ichthyosis Vulgaris sufferers would prefer living in temperate countries. I had rashes in between my thighs due to the cold and dry weather, I had to stop by the washroom every other hour not to pee but to apply lotion. My skin was flaking badly and sleeping was so uncomfortable because the skin on my back was so dry (and stiff). It only got to the torso and back area after I reached 20 years, I used to have smooth skin on my torso but it spread. The next time I traveled Taiwan also during Autumn, I made sure I brought a whole big full bottle of lotion and bring them to bed just in case.

I read about Dermal Therapy AHA (from the forum) but it has to be imported from USA so I will consider ordering it, together with the Voda soap. I also found some Malaysian suffering from Ichthyosis Vulgaris so I am planning to share the best soothing remedies (sadly there is no cure for Ichthyosis except gene modification I guess)! I had always thought only me and my brother had them. I have 2 siblings but one was perfectly fine with fair smooth skin. My Mum is not affected (but could be a carrier of the gene because my great aunt has it) and my Dad only has them on his legs. Even my parents didn't know until I told them what is the disease called and that the doctors who treated me, despite being specialist were all wrong!

Past soothing method: shower with Johnson's baby milk bath, scrub like mad using loofah (provided I have no eczema rashes else I will avoid that area), rinse, pat dry and apply St.Ives Vitamin E lotion (in green)

These 2 are cheap over the counter brands, available in Watsons or Guardian, which I found didn't dry my skin so bad. I will however try the Dermal Therapy and Voda soap combination soon!

Current soothing method: Homemade body scrubs from freshop_malaysia on instagram (Seasalt, Detox and Dryaway), Vaseline Intensive Therapy lotion, available over the counter. Now I only need either one of the scrubs (no more loofah needed!) and the Vaseline lotion, it lasts all day

I apologize in advance for any typing errors because I don't have the habit to re-read what I write, it's a type and publish thing for me :D

And, call me MeiLin. Hope this blog will bring you some insights on how can we all cope with Ichthyosis Vulgaris. You can contact me at meilinxo(at)gmail(dot)com or using the contact form on the main page :)