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Who could give you some advice? Maybe nobody can help me. [Copy link] 中文

Rank: 4

Post time 2006-4-15 10:05:00 |Display all floors
I've suffered from Vitilogo (白殿風) for seven years. Vitilogo, maybe some don't know about it, which is a very obstinate skin disease. It is said that there is no effective way to cure it all over the world up to now, though there are all kinds of advertisement to cure it. Now the doctors and specialist even couldn't find the specific reasons that got the disease for some person. They only know they are the mixture of many reasons, such as gene, environment, chemicals in the air, moods and etc. The affected part are extremely white, which make the patients look different from others , make them produce a sense of inferiority. Usually it has no physical misery if you ignore it. But the harm in spirit it give the patients is heavy.

Due to got this disease, I payed more attention to its related information,such as new cure methods, the patients' feelings, media cover regarding Vitilogo. I know some persons even commit suicide due to cann't cure it and lose confidence. I know some persons even to do skin-grafting operation, though doing this will not cure it basically, the cure time is shorter , it only make the outer skin look like normal temporarily and will continue to grow later. I also got that Mike Jackson bleached his skins due to got this disease from the net, Maybe it is the media talking nonsense, but I think it was true. I even came across for several times the cheaters who want me to buy their false medicine, said their medicines are handed down in the family for top generations.

At the first 5 years, I cured it in three hospitals, two in BJ, another in XF, all of them have some fame in curing Vitilogo. For this special disease , I don't believe the small hospitals. Usually it will take at least 6 months  in any hospitals. Usually there are two kinds of medicines, solid used to take and liquid to scrub the affected points, two times a day. In the third hospital I cured , besides these two kinds of medicine, a ultraviolet lamp also used to shine the affected points. Usually the solid medicines to take have less effect, taking much will put people in stomach trouble, but it was said to cure it fundamentally. It seems that ultraviolet shine and liquid medicine have a better effect, which are said to cure the surface. They usually make the affect points become black first ,then gradually recover to normal.
In every hospital, it can cure it to be close to recovery , but at last it will recur.

Now I haven't cure it any more for almost two years. It still have some expand, but very slowly. Why I ignore it now? First, I cann't find a hospital who can promise to cure it completely. Second, the course of curing is more miserable than non-cure, the time is long, whether solid ,liquid medicines or ultraviolet shine make you discomfortable; first the color will turn black and not unified, which make your faces more ugly. Third, I don't have suffient money to waste to hopeless treatment.

Who know some good curing methods? Pls tell me and I will very appreciate.

Besides, due to Vitilogo for many years, I also have some mental problems now. People discriminated me whether in employment or love.Can you imagine what the life will be like without good job and love for years?  I am not sure when is the end of such life. Sometimes I thought, If I could choose,I prefer got a disease which torment my body badly, even make me die earlier. I really cann't stand the spiritual misery any more.Of course I will not kill myself, I have something important to do, I also have no courage to do it. Now my work is not very good, I still have no a boy friend. I know I should deserve a better job , the salary is 2~3 times than I was paid now. But I hesitate to find a new one due to this partly. Of course someday I will change one. Maybe I should not hunt job, I should star my own business. But I dont know where to start? I have neither sufficient capital nor experience. Maybe I should work as a free profession. I am not sure which kind of free profession I can do. I don't like the life in the cities, I have been to the biggest cities in China and worked in each city for some time. I come from the countryside, I don't like the life in the countryside,either, but a little more than the life in cities. But I know I hardly live in the countryside, just been there when I am very young and cann't do anything. I cann't do the physical labor in country,  I even cann't stand the violent sunshine, let alone do things under violent sunshine.

I don't know how the scientists are doing reseaches to tackle new and difficult diseases. Vitilogo has existed for many years, why so far they cann't even track the specific reasons? Without knowing resons, How could find a good way to cure it? Sometimes, I imagine I could use my body to let the doctors to do experients, "use poison as an antidote for poison" , even if they poison me to death, I'll not let the doctors take the responsibility.

What should I do ? Even if a little spiritual condolence, I'll very thankful.

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Rank: 8Rank: 8

Post time 2006-4-15 18:28:08 |Display all floors
http://www.niams.nih.gov/hi/topics/vitiligo/vitiligo.htm#1

Jesus, hellenen, this is very sad.

of course you probably dont' want to hear this


I think you shoudl find a professional to tlak to to help you boost your confidence.  It's not the end of the world ya know.  

Have you tried looking into church?

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Rank: 1

Post time 2006-4-15 19:11:24 |Display all floors

Reply #1 hellen1815's post

I'm sorry to hear that. But you should try every way you can to cure yourself.

Life is difficult for every one in the world,in different ways.

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Rank: 6Rank: 6

Post time 2006-4-15 21:33:22 |Display all floors
Don't waste a lot on untried cures.

What you've described as your treatment is pretty much what is described on web sites here in the USA.  So your medical attention is good.  You should not seek "cures" outside the treatment of your doctors, since these could be harmful but are more likely just not effective.

As for the emotional effect, your doctors can help a lot there.  If the area affected by the loss of pigmentation is not visible then you have a little more of a challenge.

I met someone during my college years who had the condition you have, and it was a somewhat of a surprise to me.  He was black, and the contrast between the skin area that had no pigment and his regular color, which was dark, was dramatic.

I do not mean to minimize your suffering or your concerns, but you do have some advantages.  Everyone has strengths and weaknesses.  You're able to write English better than a lot of other people who use this forum, and that is a big personal advantage.  So when you can, remember your advantages.  

龙年顺顺利利

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Rank: 8Rank: 8

Post time 2006-4-15 23:02:29 |Display all floors

My mother has 白殿風 from the neck down.

Originally posted by hellen1815 at 2006-4-15 10:05
I've suffered from Vitilogo (白殿風) for seven years. Vitilogo, maybe some don't know about it, which is a very obstinate skin disease. It is said that there is no effective way to cure it all over ...



My mother has 白殿風 from the neck down. She just ignores the patch (fairly big patch). And of course she can also hide it by not showing...but I can still see part of the white area on her neck...we are so use to it now that we don't even talk about it. I guess it would be different if the patch is on her face.

As a member of this forum and not knowing much about your situation, I would suggest that you focus on your strengths rather than weaknesses....consult with professionals about your emotional issues...form a support group...and remember inner beauty is the best bet in a long-term relationship. Your man where ever he is now definitely would know that..and you will meet that man eventually.
:)

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Rank: 4

Post time 2006-4-15 23:04:14 |Display all floors

Be confident !

Although you'v a serious disease, you still should face your life. Nothing is impossible! We should believe there will be some miracle in the future!You should be more confident of yourself, and make yourself strong in the battle to sruggling the Vitilogo.
Be happier

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Rank: 4

Post time 2006-4-16 21:53:29 |Display all floors

Reply #2 mikeghet's post

Have you tried looking into church?
Why looking into church? I've never been to church.

Maybe a good psychologist could help me a little, but china is in great want of psychologists. It's hard to find a proper one. It doesn't matter much, I've some friends who could give me some helpful psychological instructions. I've a good knowleage of Vitiligo, usually I could make right choices.

Maybe I am as not unhappy as you thought, I am a little used to it as it accompanied me for yrs. Just sometime I feel confused and annoying. I will still accept the fact even if it will accompany me all my life. Since no effective cure methods all over the world, spending more time on it is useless. I should spend more time on what i can control, Before I thought I am the most  unluckist person, but now i dont think so. Though I am not satisfied with my present life, I don't like the life of more than 80% Chinese.

I still need to appreciate Vitiligo , which make me mature  and strong in mental, make me think more about life, make me like to read more literal works. As my major is chemistry , before that I don't like to read them.

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