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Hi Shars,

Welcome to the forum. I see its your first post but your story stands out as it is the one which can invoke the deepest fear among almost all us vitties who are or hoping to become a parent someday. Honestly I have no idea how would I react if I happen to see a white spot on my kids. Yes, it is very hard to accept it for our children specially when we know that we are the cause of it all. Even if our spouse and children would never blame us for anything, it is the guilt which will remain.

The one thing that you should be doing is not to repeat the same mistakes that you did in your lifetime about treating your vit. You know that you have to take it very seriously and start on with treatment right away. The present available treatments are far more effective when the vit is just starting and nipping it in the bud is the best solution. Get more info about what foods to avoid (milk and sour foods). What soaps, toothpaste etc he should not be using (antibacterial stuff). You will find a lot of info on this site with real stories of people who successfully treated it.

Vit affects men and women the same way as depression would. The only difference is that men are better at ignoring it while women are better at hiding it in case they have to live with it forever. Do not let the vit reach that level with your kid. I am sure with proper and strong resolve, you can take this problem head on. We are with you.

Cheers

Sanjay

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Hi Khushi,
Your story is very similar to mine except that my vit started at age of 23 after I was diagnosed with Hypothyroid. I was done with school and college by that time and was spared the pain thru my teens. I am also the only member of my family with vit. Now I am 36, married and have 2 adorable kids. I tried to ignore it, treat it, live with it….but it still sucks. No matter how much I try to convince myself that it doesn’t matter but the truth is that it does and I can not think of going to a nearby shop without my face camouflaged. I can not do anything about my hands so I do not feel uncomfortable about it any more.
The only way to ignore it is to keep yourself busy with work, with husband, children and gossiping. about other people’s problems.
If your vit is so extensive that it is not seemingly possible to repigment it, then going for depigmenting is a rather good idea. I am also thinking about depig right now. Treat it just like another treatment option in which a solution to vit is almost a certainty and you can hope to live a normal life without worrying about vit coming back.

take care

Sanjay

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oops…my mistake…reading through too fast…but still can you post the website if it is about vitiligo in dark skinned people. cheers..sanjay

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Hi Suleka,

I just hope it wouldn’t take up to 5 yrs for me. Actually the visible
areas such as face, neck, hands and arms are the areas of most concern.
If somehow I can manage to depigment them early, then the hidden areas
such as my back and upper legs worry me least even if it takes longer.
At the most I won’t be able to go to beaches with my shirt off but I can
live with that for some years. I am going thru depig forum. Its huge so
may take a while to go thru all.

Fake vitties issues? hmmm thanks for the tip.. I will take care to steer
away from those guys. Can I have the website for Lorraine’s other site?
I need to read about experiences of indians and black people as it is
totally different from caucasians.

Cheers

Sanjay

[schandel]

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[schandel]

Hi Suleka,

Have to agree with Emerita that your inputs are quite valuable and encouraging. Sincere thanks.

Regarding my candidature for Depigmentation, Let me show you the reality of my vit and you will have a fair idea of whether I am a good candidate or not. If its the percentage of visible areas on my body, then I am quite sure its more than half of it. Please visit the link to see the pics of my vit. http://photos.yahoo.com/san_ayn . I took these pics just yesterday so they are as recent as can be.

About my skin’s photosensativity, I would say I also have quite a “thick” skin. My hands, which are totally covered with vit, never burn no matter how much I expose ’em to Sun. If I go by your own and your friend’s experience, I hope sunburn will not be much of an issue with me too. I live in almost same sunny climate as yours and using regular sunscreen is also not a problem for me.

Regarding skin cancer, I told my derm the same thing ( lack of pigment cell means no melanoma), but he said there are other kinds of non melanoma skin cancers ( squamus cells and basal cells) which are also associated with Sun exposure. http://skincancer.org . But then again these are not the fatal kind and can be controlled if detected early and we would not be at greater risk than other white blonde people. Not a huge concern for me.

You give a lot of comfort to me when you say that all the points my derm mentioned are not affecting you even living in a warm sunny climate. Personally I like being in bright sunny climate as compared to cold and dark climates and sun cheers me up.

Right now I use camouflage on my face and neck to cover the white spots. Now if I go for Depig, my another concern is how should I handle the time when I wouldn’t know whether I should cover the white area or the remaining brown ones? Is it possible that my dark brown will gradually fade away and all I have to do is to keep using lighter and lighter shades of camouflages creams till I do not need it at all. Did you have such problems? I am sure Emerita wouldn’t have such problems as she says that she is already very fair, but my contrast is strikingly visible.

Cheers

Sanjay

 

 

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My Dear Emerita,

Yes there is a woman named Henna living in Sharjah who is totally depigmented. I was in touch with her through mail last year but couldn’t meet her even when she invited me to come over and visit her. I was a bit too busy at that time, but now I am thinking of seeing her and asking about her experience. Weather here is extremely sunny and hot but it doesn’t mean much if you can avoid sunlight directly shining on your body. People hardly ever go out in the sun because its too hot in the daytime. Most of the social life begins after sunset. My work also does not involve too much outdoor activity.

Going on a repigmenting path once you have a family and kids is extremely demanding. I can vouch for that. When I was single, I had my vit well under control using psoralin+PUVA on my upper body and melanin transplant on my hands. I was very keen to keep it under control and i was quite successful at that time. At the time of my marriage there was hardly anything visible on my body. Once settled into a married life, I had less and less time, money, energy or inclination to aggressively fight my vit which was spreading very slowly and steadily. I kept fighting it every now and then, getting partial success but every remission was worse and my treatments only made my vit more determined to come back with a vengeance.

I am still wrapped up in the same vicious cycle. Thought of depigmenting has recently gained its entry in my mind and I am still exploring if this is for me. I still remember asking My first derm (who ironically himself had vitiligo) if it is possible that my vit will spread all over my body and i would become white. His response was a definite NO. He said my vit will never spread enough to cover my whole body and if it does it will be take around 30-40 years if I leave it unattended. I guess he was not wrong and it might really take that long if I do nothing about it. It scares me to think that Vit is going to rule my livable life.

Nope I never been to Melbourne. I sure want to, considering it is considered the best city in the world in terms of living standards. I will let you know if I decide to come over and visit the city. Middle east forum is empty and no one ever posts there. Strange but true.

Thanks for your prayers. You are really sweet.

I came to Dubai just for a change of job. I have no relatives here. Its been five years and the experience has not been very great. Specially now with ever increasing rents and traffic problems. It is now one of the worst city to drive in but one of the most expensive to live in. Yes there are no taxes but rent for a standard 2 bedroom house without furniture is above 2000US Dollars per month. Middle income expats are either moving back to their home countries or moving to canada/ australia. I do not suggest anybody to move in here unless they are getting paid a very high salary. The positive thing about dubai is that you never feel that you are outside india. There are so many indians and pakistanis that it feels like home.

All the best to you too..take care

sanjay

PS. I have added some pics in my picture galleries on this website after becoming a supporting member.

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Hi Suleka,

Thanks for the very useful thoughts. Its nice to know that even after getting rid of your vit, you are still helping out other people who need guidance. You have definitely helped to strengthen my resolve to seek a permanent solution to my problem.

You had lost 80% of your pigment when you thought about depig. A very valid decision at that level. It might take me ages before I reach that kind of level. Although my vit affects almost all my body, but the amount of total white skin compared to the black skin is much less (around 15-20%). As i read somewhere, the apparently normal skin in a vit affected person is actually not normal and will become white in case of any scratch. This is true in my case and I do get white permanent streaks if my skin gets scratched on my arm or legs. It is like I know that I am going to lose more pigment but the process is painfully slow. Do you know of any person in this forum who is going thru depig even if he/she has more black pigment than white? Is it possible that I will go through same difficulties to get rid of my pigment as i am having to gain it back?

Regarding my choice to depig, well…I am also fiercely independent when it comes to my own life and peer pressure doesn’t affect me as well. Fortunately I have never been subjected to any stupid comments/queries from strangers till date, its just that I feel self conscious in public because of the camouflage cream i have to put on my face and neck which keeps rubbing off on my clothes. By the end of the day, collars of my white shirts are more brown than my skin. I do not like wearing turtle necks and full sleeve clothes in the kind of hot weather that we have in Dubai. Also being a man, putting on make-up in morning and keep touching it up every now and then takes it toll on my self image.

Cheers

Sanjay

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Hi Rajesh

Whats missing in this website? I think we need to stick with the global community, that way we can keep in touch with latest happenings around the world.

regards

sanjay

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Hi Emerita,

I wish you all the best for your search for a right soul mate. Finding the right partner is the key to a happy married life and yes it is very vital for him to be aware about your vit beforehand.

As for the update on my case, I wrote a letter to my derm asking him to visit certain links about depigmentation. He is quite a decent guy and took effort to convince me why I should not depig. I am attaching his reply as it is.

“Dear Sanjay,
It is a choice of the patient, not the dermatologist to go in for full depigmentation with Benoquin! And, in the article, the dermatologist has given HIS opinion, it is not a universally accepted norm.
Here are the points:
1. Melanocytes provide protection from the carcinogenic UV rays and sunburn. It is worthwhile to try to retain them than remove them altogether. This is why most dermatologists try to conserve them.
2. Benoquine, though produces only allergy in moderate climates as in US., the possibility of such reactions and photosensitivity are multiplied in our extreme temperatures. That is why this drug is not approved to be sold here.
3. You will have the same problems you are facing now to get the colour back while trying to get rid of the color, with the added risk of photosensitivity, sunburns and skin cancer (non melanoma ) in the scorching Midlle East summer!
There are more reasons, but these are the main ones.
We doctors always favor construction rather than destruction!
Still the choice is yours, we can try after you exhaust the remaining options….”

So I need to exhaust remaining options it seems. His points against depigmenting are also quite valid. Its pretty difficult to decide.

cheers

Sanjay

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Hi Rajesh,

Thanks for the input. Its not that I am suddenly under tremendous stress due to my vit. Its just that at this point of time, I feel that it is futile to wait for a cure. No derm is ready to give any guarantee that they can reverse it permanently. All they offer is hope and some means to control it and arrest it and that too temporarily. I do not want to discourage anyone who has it within controllable limits and who can afford to be tirelessly keen to get rid of it. It is all my fault that I was too busy or lazy at the point when It was spreading on my fingers and neck and other parts of the body thinking that I can take care of it later when some promising cure will be available.

I did go to the derm yesterday and he was saying the same things that I should do food control and avoid sour, fried and spicy things along with destressing myself.

Now I was not consuming these items in an abnormally manner in past and I prefer home food over fast food and I feel my gut is fine. I never had any acidity problems ever in my life and my digestion is also fine. The point is that I am doing something wrong but can not pinpoint what it is. I am going to stop taking milk, curd and sour stuff from now on, but have little confidence that it will reverse the damage that has been done.

As far as stress goes, I do not have any abnormal stresses too at the moment. I have noticed that my vit increases when I am with my family rather than when I was staying alone in Dubai. Does that count? Although I am more susceptible to stress than most people, It is hard to get rid of stress which is part of your daily job. Being a creative designer as well as project manager is demanding enough. Add to it the daily travel of 120 km through the hell of Dubai trafiic.

My decision to depig is suspended at the moment due to non co-operation of my derm.

I found the following in the FAQ section of National Vitiligo Foundation Page. http://www.vitiligofoundation.org/askExpert.shtml

“”Q. Why can’t we find a cure for vitiligo?
A. Many investigators have looked for a cure to vitiligo. We need to find some medication that will stop its spread first. Then we could cure vitiligo. But despite many studies, the mechanism for destruction of the skin pigment cells remain an elusive goal. The cause will be discovered in the coming 25 years or less.

Q. Do we know what causes vitiligo?
A. We know that the white spot of vitiligo are caused by destruction of melanocytes in the epidermis. But we do not know why they die and disappear. That is the key problem. Everyone agrees that there probably are many causes.””

They hope to find a cause in less than “25 years”. Add to it few years they will take to find a cure. Then will come the FDA approval. You do the maths. I will be dead by then. lol…

Cheers

Sanjay

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Hi Emerita,

Thanks for the encouragement. By the way I went to the Derm yesterday along with my wifey and as expected, he refused. He said you have much more dark pigment on your body than white pigment and that any hydroquinine based product could have harmful side effects on my body. I told him I have exhausted most of the treatments but still he put me on a regimen of Topical Tacrolimus, some steroids and asked me to completely stay away from Vitamin C and to destress myself. My wife also agrees with him.

There is a lot of difference between convincing yourself and convincing difficult people like your derm and more so like your wife.

Is it possible to get a prescription over phone? Have you got one? How you pay him? Also can I get benoquin 40% from India?

If you have vit only on your hands and feet, I would say its a very brave attempt to go for complete depigmentation.

You seem like a cheerful girl. You said you are going to get married soon. Does it mean you are engaged? What your parents and fiance and your future in laws think about your decision? Unhe bataya bhi hai ya nahin?

Cheers

Sanjay

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Hi Abbas,

Thanks for your kind opinion. As I said before this is obviously not my first choice and I have been waiting patiently for a cure for last 15 years. I am already 36 years old now and the waiting is getting more painful with each passing year. My spreading vit is kinda forcing me to take some drastic measure at the moment. It is getting more and more difficult and messy to effectively camouflage it. I know that an indian person would look odd with pure white complexion in India, however I am not in India and here in dubai which is a multicultural society, there is a lot of white population and walking on street, I would certainly not be an odd one out and can pass off as a westerner or an arab. I have also seen indian people in Dubai who are depigmented. I don’t think they look great or something but certainly not a freak too. At least they don’t have to worry about hiding or curing vit, which takes its toll on your pocket as well as emotionally.

keep in touch

Sanjay

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Hi Emerita,

Thanks for the feedback. Yes I am going thru Depig forum and it is quite useful. As they say it depends on individual in terms of how long it will take.

The doctor in pune is too far as I am in Dubai and there is a long time for me to go for vacatiions in India where I live in Delhi.

Benoquin is available in Dubai at around price you mentioned. All I need is a doctor who would prescribe it for me. The main thing I like about benoquin is that it apparently lightens the skin gradually rather than creating white random patches and later joining ’em up. That was my main worry when I did not know how the process goes.

I had to cancel my yesterday’s appointment with doctor due to some reasons. May be i will go today. My final decision will also depend a lot on what he has to say. If I don’t like what he says…may be i’ll take a second opinion.

I believe you also have it on around 10-20% on your body surface and people think that it is too less to go to Depig. Well, I have a similar situation too. the vit is not yet on my Back, torso and upper legs but it is present where it matters most i.e. face, lips, neck, arms, hands, feet etc. Using presently available expensive treatments ( I even bought a home UVB unit), i can only get limited success on my face, neck etc and that too for a limited time. Once I stop the treatment, It will gradually come back. I have been through this cycle many times and I am tired of it.

Thanks again and keep in touch.

Sanjay

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Hi Muslimah,

I guess you will be getting more comments full of medical advice and sympathy rather than shallow or hurtful comments. But you will get comments on your vit..thats for sure…Vitiligo in india is not uncommon and almost everybody can tell you either about a friend or relative who has it or about some magic person who can cure it forever. If you listen to all of ’em..you can gather a pretty extensive list of people all over india who have a sureshot cure for vitiligo…and similar list of medical(?) products and methods which can cure it. Just don’t get tempted to try all of ’em.

You say you are very conscious of the vit on your face showing up and yet you hate covering up. In my opinion, covering up is not a bad idea at all. All of us vitties do it…some at times and some all the times. I also have vit on my face, hands etc. I can not cover my hands but I do cover it up on my face, whenever I go out in public. There is nothing to be ahamed about it. It just saves you the trouble of being conscious of your look 24/7. It will not change what you are and it definitely does not mean that there is something wrong with you. Almost all women apply makeup to cover up ther faults and enhance their looks. I see nothing wrong with it, morally or otherwise. As for the options, even if you can’t lay on your hands on Dermacolor or Dermablend in such short time, you can still buy some “Colorstay” foundations from Revlon from any mall in Kuwait.

best wishes for the trip.

Sanjay

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