Vitiligo Support Forum

Amita,

Hey, thanks for believing in me! I was surprised at some of  the comments to my posts. I try to give as much detail as possible because i don't think just one magic pill will cure anything. Life style changes, determination and self disapline are a big part of healing your body. It's been hard sticking to a nutritional diet and pill regiment but i think that's why i'm seeing results. I wish Merryclinic wasn't so expensive too. Think I'll try it for one year to see if pigment is still appearing, so far i have new pigment weelkly since i started. I suppose it could just stop and quit working, so keep your fingers crossed! I'm so glad your a happy person, so am i. I think people need to be grateful that Vitiligo doesn't kill you. Life could be so much worse. Think about the suffering of others and count your blessingings! 

Take care,

Gracie

My name is Lee and after reading your message I feel like I want to give you a big hug!. I have had the disease since I was 18 and now I would say that I have lost 80% of my pigment. I am now 37 years old and am married with 2 children.

About a year after it began I too felt like I was loosing my looks and turned to alcohol, anti-depressants and felt very lonely living with this thing. I have not taken anti- depressants for a long time now and don't think they help much. I still feel sad about it from time to time but I learned it's really just not important in the broad scheme of things. . My hands were like leopard skin for such a long time and I used to sit on them, try to hide them and then the whole of my body started to become affected and then I realised I had to live with it. Unlike you I never had a problem with the opposite sex and looking back I think it was because I just said to myself hey it's me, if they don't like it tough! If someone wants to have a relationship with you it's not just about the way you look. Saying that I understand it's the first thing they see but maybe trying to look past it yourself you may find it's becomes secondary to a potential partner too. My husband and many of the partners I have had always say they don't even see it. Believe me it's there, I look white as a sheet. My son who is 6 has just started asking me why I look so white, it hurts but I just say thats me and he loves me all the same.

You know you can't let it rule your life too much. It's too short. Saying that I have to say I still feel more comfortable when it is covered up. Summer is harder but I am not going to sweat my ass off because I look different. I do wear face makeup, being female its something I have always done and I think it helps with confidence if your face is a bit more even toned. You could try some dermablend - at least it's not too expensive. You mention you have spent money on treatments? I never did and I met someone this summer in michigan who had had 2 years of treatment fully pigmented and stopped only to have the disease return. I was glad I didn't go down the same road.. She has come to terms with it too and hey ho there we go.

Is having a relationship with someone important to you? Do you have friends? Do you talk to them about it? Or with family? You know talking about it is all ok but really at some point you have to say I am not going to talk about it anymore and only talk about it if someone asks. To come to that point you have to grieve for what is lost, this I understand.

You say that there are no support groups in Vancouver and people are uneducated about the disease. Well I would like to say that I am from the UK and have travelled to australia, lived in germany, the netherlands and now luxembourg and there are no support groups and people are not educated about it. I educate them about it if they want to know and even then they don't understand it and never will, I don't either.

Throughout the last 19 years of this disease I have tried to make light of it and it is a rollercoaster ride of emotion. You need to find out how to cope with it. It's not going away so what helps?

Don't give up your personality to it. Be who you are and don't let it control who you are!


Lee
P.S We all change with age, we don't get uglier - and if its not vit it's going to be liver spots and wrinkles.

Amita,

Think you mail was just great!!!!

Lee

Hey Lee ~  Right back at cha...  The thing you said about age was so true.  Being happy with what you've got is a good attitude to have.  

Anyone that doesn't think so, well I just say - Okay, go to the "pediatric burn unit" in any hospital, and see the patients there.  Then, tell me if your situation is really all that bad...  I didn't think so.

Kind regards,

Amita

HI Amita,

Very true!!.

Have a question for you.

Now I wouldn't normally search out such a site as this, just happened to stumble upon it as I was looking into whether or not I am producing enough vitamin D. Seeing as the pigment in the skin is required to make it. Do you know anything on this subject?

Hey Lee ~  Yes, I have been researching the topic of food/diet for auto-immune disorders specifically vitiligo (very heavily) for months now.  I posted (last night) a long summary on the subject of my findings - check it out.  Additionally, I would recommend you get your family doctor to run a broad panel of tests to see your vitiamin levels, thyroid function, kidney & liver function, hormone levels, etc.  Further, discuss the diet (if you're interested) to make sure it's right for you first.  I did and was surprised by the results.  (not going into here). 

Now, I am starting "pre-natal" vitamins - ya know for pregnant women to take before they get pregnant.  I'm not trying to get or am pregnant, so this was a new twist for me - but makes sense.  I get lots of the "good" vits. every day, and not too much of those not needed-it's about balance.  Folic acid, as well as, Vit. D are very important to stimulate re-pigmentation - I just get it naturally my diet & from the sun - 30 mins. min. each day.  If you can't - b/c it's too cold - then supplements would be good - but again I'm no MD - so check with your dr. first. 

Take a look at my other post, because I was very surprised by how just switching up my foods, avoiding some, and eating lots of others, has not only made a huge difference in my overall health (energy, sleep, weight, blood pres., etc.), but also I'm seeing no new spots, and tiny little freekles starting to fill in my old spots.  So, I'm hopeful, but trying not to get too excited - yet.  Keep your fingers crossed, and if this seems to be a perm. solution to our vitiligo - I will be posting a laundry list of my food, meal plan, life style, etc.  Any info. I can provide to help others out there is my goal. 

NOTE:  For any skeptics on here - back off!  I'm doing "my own thing" with the help of my nutritionist, dermatologist, and family physician.  All traditional treatment has done nothing but hurt me, and I've had it with the so called "cures", lotions & potions - they have not helped me at all.  So, I'm getting smart, informed, researching all areas of the world, and making my own conclusions.  Most sources seem to be clueless.  Don't like it - don't care.  This is my journey - not yours.  If cutting out steak, cheese burgers, and acidic food will make my spots go away forever, then it's worth it to me. 

Lee ~  Sorry to go off like that - but just wanted to be clear on some points I've made.  I hope this helps you on your journey, as I wish you the best.  Feel free to let me know if you have any questions or concerns.  I plan to be posting some of my updates as I move along...  We'll see!

Kind regards,

Amita

Hi Amita,

Thankyou so much for taking the time to write to me. I will go and get checked out. I will be interested to see your plan when you post it.

Take care.
Lee
x

First I just want to say that I read your story and it broke my heart. I believe that no one but people who suffer from vitiligo can understand what it is like for people like us. And when it is on your face it is horrible. I have had vitiligo since I was 15. It started on my face and spread to spots all over my body. Being a girl and have this on my face I can totally understand what it is like to have people reject you. But what I can tell you is this, I am 29 now and I have been married to a wonderful man for almost 8 years now. He sees me for me and not the vitiligo. And I can tell you that there will a women one day that will see you for you and not the vitiligo. You need to keep you head up and your spirits high. Think of this as a blessing and not a curse. Things will get better! I really hopes this helps you.

As far as the support groups go maybe you should start your own support group for you and other people like us!

Super Girl

leebe36 wrote:

My name is Lee and after reading your message I feel like I want to give you a big hug!. I have had the disease since I was 18 and now I would say that I have lost 80% of my pigment. I am now 37 years old and am married with 2 children.

About a year after it began I too felt like I was loosing my looks and turned to alcohol, anti-depressants and felt very lonely living with this thing. I have not taken anti- depressants for a long time now and don't think they help much. I still feel sad about it from time to time but I learned it's really just not important in the broad scheme of things. . My hands were like leopard skin for such a long time and I used to sit on them, try to hide them and then the whole of my body started to become affected and then I realised I had to live with it. Unlike you I never had a problem with the opposite sex and looking back I think it was because I just said to myself hey it's me, if they don't like it tough! If someone wants to have a relationship with you it's not just about the way you look. Saying that I understand it's the first thing they see but maybe trying to look past it yourself you may find it's becomes secondary to a potential partner too. My husband and many of the partners I have had always say they don't even see it. Believe me it's there, I look white as a sheet. My son who is 6 has just started asking me why I look so white, it hurts but I just say thats me and he loves me all the same.

You know you can't let it rule your life too much. It's too short. Saying that I have to say I still feel more comfortable when it is covered up. Summer is harder but I am not going to sweat my ass off because I look different. I do wear face makeup, being female its something I have always done and I think it helps with confidence if your face is a bit more even toned. You could try some dermablend - at least it's not too expensive. You mention you have spent money on treatments? I never did and I met someone this summer in michigan who had had 2 years of treatment fully pigmented and stopped only to have the disease return. I was glad I didn't go down the same road.. She has come to terms with it too and hey ho there we go.

Is having a relationship with someone important to you? Do you have friends? Do you talk to them about it? Or with family? You know talking about it is all ok but really at some point you have to say I am not going to talk about it anymore and only talk about it if someone asks. To come to that point you have to grieve for what is lost, this I understand.

You say that there are no support groups in Vancouver and people are uneducated about the disease. Well I would like to say that I am from the UK and have travelled to australia, lived in germany, the netherlands and now luxembourg and there are no support groups and people are not educated about it. I educate them about it if they want to know and even then they don't understand it and never will, I don't either.

Throughout the last 19 years of this disease I have tried to make light of it and it is a rollercoaster ride of emotion. You need to find out how to cope with it. It's not going away so what helps?

Don't give up your personality to it. Be who you are and don't let it control who you are!


Lee
P.S We all change with age, we don't get uglier - and if its not vit it's going to be liver spots and wrinkles.

My friends and family have always been supportive and generally they try very hard to convince me that it does not really look that bad. I also resorted to illegal narcotics at one point when I didn't know how to deal with these kinds of problems but I had to put a stop to that. I'm glad that I was not addicted and got off the wagon before it was too late. Never got so bad as to go on anti-depressants but I'm ever so close to that stage.
I was surprised to hear that you were in the UK, Germany, Australia....... and all those were still uneducated about the condition. Seems to me because it's cosmetic and not life threatening that it takes a back seat to other conditions. Let's hope one day someone will recognize the psychological affects of living with vitiligo.

Super Girl wrote:

First I just want to say that I read your story and it broke my heart. I believe that no one but people who suffer from vitiligo can understand what it is like for people like us. And when it is on your face it is horrible. I have had vitiligo since I was 15. It started on my face and spread to spots all over my body. Being a girl and have this on my face I can totally understand what it is like to have people reject you. But what I can tell you is this, I am 29 now and I have been married to a wonderful man for almost 8 years now. He sees me for me and not the vitiligo. And I can tell you that there will a women one day that will see you for you and not the vitiligo. You need to keep you head up and your spirits high. Think of this as a blessing and not a curse. Things will get better! I really hopes this helps you.

As far as the support groups go maybe you should start your own support group for you and other people like us!

Super Girl

Honestly I bet you that if I started a support group I could find plenty of local vitiligo sufferers that would be wanting to join. I do feel better after reading these stories of people like you which found their soul-mate. It lifts my spirits and makes me want to continue searching for my partner and that's what I'm going to keep on doing.
I'll surely be happy one day even if the road to getting there was a rough one I'm not going to stop trying.

Thanks to all that have posted supportive messages. They are meaningful to me

I guess I don't much care about pills or what this looks like on me, maybe it's because of my age, I'm 57 now, just an old man full of ailments, Vitiligo is just one more to add on to the others which include degenerative arthristis and anxiety disordres. I guess the Vitiligo just doesn't bug me, it's all over my arms, that's where it's most obvious, from my shoulders to about mid forearm, and patches on my face also which makes my face look like I've been sweating and working and need to wash it, and it's gone to the top of my head as well because my hair is turning white or grey/white in areas. I'm a left over from the 60's so my hair is really long, nearly to my belt and I wear it in a ponytail.

All I can say is don't let it get ya down, at least your alive and not cripple and can't get out and enjoy life. Anyone who would turn away from any of you because your skin is patchy isn't a true friend anyway and it's sad to think someone would be lonely because they have this. Unfortunately our world is full of those who judge a book by the cover and never find out how great the book is until it's too late. If you're seriously trying the pills to cure this and that's what you want then good luck to you, I'm just to the point in life that I say, "eh what the heck, like I could give a rats backside" .. it doesn't change who I am nor do I let it get in my way. If it gets in someone elses way that's their bad, not mine. Good luck to you all, I hope you find what you're searching for.

SnowCajun
Spokane Valley, WA
Just south of Canada's most beautiful province, BC!

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Hi
  I am from Mumbai, India. I read all the stories in the bogs. I have vitiligo since last 12 years.My 80% of the body skin is affected. Luckily ! It has covered my face completely, so it doesn't look that ugly.I am now 21.

Even I have gone through all the so called sufferings, but today I am a changed person. I am more confident.

I had earlier done allopathic(4 yrs), homeopathic(6yrs), and herbal (1yr)treatment for it.
Now currently I am not undergoing any treatment. A close experienced doctor suggested me to stop all kinds of treatments, since I was undergoing steroid therapy, which has a lot of side-effects on the body. And application of steroids on 80% of body skin was not acceptable to doctor.

My doctor asked me a question:

Does it bother you in anyway?

At that movement I was so used to vitiligo that my answer him was: No.

Today it has become a part of my identity and I no more waste time on thinking on it: I am strong.

I thank god for giving me friends, who have not asked me a single question about it since last 4 years and my family which is very supportive.

I believe: Everyone’s life in this world is different, no one’s same. God has given us a chance to live this life and this is the biggest thing for me.

I wish to talk about a lot of things to everyone. I am currently in my final of bachelors in Pharmacy degree. If anyone feels to talk about anything ( from movies, songs, yoga, life, studies), then here is my email ID: aamitbcp@gmail.com

You can either write or chat on Gtalk.

Remember its said in Hindi language that: By sharing sadness it becomes less and by sharing happiness it doubles.

 

Hey lizardguy

I was frustrated about my vitiligo today and googled vitiligo vancouver and came across your post!  I'm 26 living in vancouver and i just want to let you know that there are support groups here.  I never been to one myself but i know they host one every few months at the vancouver skin clinic.  cheers

i also got vitiligo at an young age too..but then it was so simple..i was at school and i didn't give much thought until i got older..then the problems just started to roll in. i feel so ugly inside but to every one else i look normal..its when i start taking off my clothes it just looks bad...i haven't told any one about this not to friends of family and im thinking how long will have to keep this up..because it wont last... i hate this..i just wish it could just disaper one day..

berzerk wrote:

Hey lizardguy

I was frustrated about my vitiligo today and googled vitiligo vancouver and came across your post! I'm 26 living in vancouver and i just want to let you know that there are support groups here. I never been to one myself but i know they host one every few months at the vancouver skin clinic. cheers

Thanks for the info
I will have to investigate and who knows this might just be the place for me. Would be great to meet others who are in the same boat as me.
Have a good weekend.

angelpie wrote:

i also got vitiligo at an young age too..but then it was so simple..i was at school and i didn't give much thought until i got older..then the problems just started to roll in.

i feel so ugly inside but to every one else i look normal..its when i start taking off my clothes it just looks bad...i haven't told any one about this not to friends of family and im thinking how long will have to keep this up..because it wont last...

i hate this..i just wish it could just disaper one day..

Yeah this is one of those things that becomes a problem just as you approach your teen years and into adulthood. Don't hide it from your friends, they are the ones who will support you most and trust me they care about you. If you don't tell them they will one day ask you about it mainly out of concern that you might have some kind of allergy reaction requiring medical attention.
Just my opinion figured it would help a little.
Take care

need to go to website vitiligosingles.ning.com for others with it