Wednesday, April 4, 2012

"Skin Cancer" or "We don't know what he has"....

.... those were the first comments I heard about Sokhav, a 6.5 year old student at Krou Yeung center with severe skin problems. He suffers from a "Elephant skin": thick and dry skin covering his body all over. 
The skin renews itself every 4-5 days for 3-4 days in a very painful process. This is only the first obvious symptoms you see, but he is also missing eye-lids as well as his ears are not properly developed. Having suffered my own bit of skin-problems when I was growing up (though nothing anywhere close to Sokhav) and knowing from that experience how hard a "abnormal" appearance can be on your self-esteem, Sokhav certainly became a case very close to my heart and I was determined to try to help him. The first thing that had to be done was to actually get a diagnose of what he is suffering from, cause it certainly was no skin-cancer. Even though the parents went with him to a specialized skin-clinic in Phnom Penh in the past, they never received a proper diagnose nor any proper help.

So with help of my friend Ruben, who is a practicing doctor in Germany, I got a initial picture diagnose together which then 2 traveling dutch doctors, who visited our school, confirmed. Sokhav has "Ichthyosis congenita" which is a genetic imperfection, where the body can not hydrate or fatten the skin itself, so the outer-layer of the skin creates a "Elephant skin". As it is genetic it is also not curable, but by knowing what he actually has, I set off on researching what can be done to improve his life-quality. Unfortunately there is not much experience nor any studies available on Ichthyosis as it is not yet properly researched. Nevertheless with the help of Ruben and some references in the internet, I put together a plan on how to help Sokhav and ease his skin-problem. That's where the whole challenge started !!

Part of the "therapy" is a very time consuming daily routine where Sokhav has to manually hydrate and fatten his skin. But if done consequently and over a long time the results are very promising. 
To start the therapy off, we needed a proper creme which is fattening Sokhavs skin and in huge-amounts as he needs to completely cover his body at least 4 times a day with it. The creme would be something you will get in any Pharmacy in Germany, even at "Aldi" as we found out - but not so in Cambodia !! And I mean all Cambodia !!! I was searching about every Pharmacy in Banlung, I had people check with big Pharmacies in Phnom Penh, I went to the local hospital, to many local shops that sell skin products, approached basically any big pharmaceutical company I know, searched the local Banlung market, I even got in touch with 3 big children NGOs which all have a health department but the only feedback I got everywhere was: "We don't have such a creme and you won't find this in big amounts in Cambodia". While it is super easy to find here all sorts of make-up or skin-whitener a normal fattening creme containing "Urea and Glycerin" and not containing perfume or alcohol is basically impossible. As the end of my time here is approaching and we want to help this boy, we now settled for a regular creme which we can get in big amounts (as a major consideration is also that Sokhav has to be able to access the creme his life long, so sending packages from abroad is not an option either).

So next week we are kicking off the "therapy" with Sokhav hoping that over the next 3-4 months he will experience major improvements with his skin.... The enclosed example illustrate how Sokhav could improve if the therapy actually helps him and he is following a strict hydration and fattening regime.

Seeing Sokhav, makes me realize how lucky we, who are blessed with good health, are! And how we sometimes carelessly waste our good health: it is just way to easy to make that excuse not to exercise or depend on our health systems and medicine... but people like Sokhav never even have the chance to be healthy, cause if they would have it they would take it!!!

This leaves me to say a BIG THANK YOU to: 

- Ruben, who is the expert behind all this and without whom I could not have put this together.
- My parents, who have generously supported the therapy plan for Sokhav so we can set him up with the initial set of "tools", cremes and other necessities
- Shamim, who has supported me on getting in touch with big Pharmacy companies to get access to cremes. Of which GSK was the only real lead and seem to be the only company that is serious...


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