HEY everybody, I’m rein and I’m 19 years old I’ve had vitiligo since i was 16 but it spread very quickly and now i have it a lot of places :( i have never before tried to fix it but I’m trying the piperine). I have one question that i am so scared to find out the answer: WILL MY HAIR FALL OUT BECAUSE I HAVE VITILIGO? I tried to research [and found] nothing. Please HELP. I’m really scared. I love my hair i don’t want to lose that too. Some of my roots near my forehead where some of the vitiligo is turning white. What can i do???
Nathalie:
Hi Rein,
First let me put your mind at ease by saying that I have not heard of anyone losing their hair because of vitiligo. That said, there are other diseases that are sometimes associated with vitiligo which may (not in every case) cause hair loss; for example: hypothyroidism if left untreated.
White hair is not unheard of with vitiligo because the pigmenting gene in that cell has turned off (I think…i’m not a doctor). Oddly enough, the tiny hairs on my hands are pigmented even though they are in the white patches of vitiligo. The hair on my head is a different story; there is plenty of well-hidden gray (thank you, L’Oreal), but sadly this is probably due to my age more than anything else. If the pre-mature gray bothers you, just color it. No one will know except you and the cashier at the store you buy it from.
Most importantly, Rein, don’t be scared. You are not alone, and best of all, this isn’t a life-threatening condition. It’s just damn inconvenient and bothersome. If you haven’t seen a doctor or dermatologist yet about your symptoms, go just for peace of mind.
What can you share with Rein about your vitiligo experience?
1. Have you noticed dramatic hair loss because of your vitiligo?
2. Have you tried piperine to repigment the white patches of vitiligo? Any success?
3. Do you notice an excess of white hair on your scalp or body?
Hi, my name is Catherine and I’m from the UK.
I first discovered Vitiligo when I was in my late teens – really weird places and very small, such as around my armpit, stomach and pubic bone, some are perfect circles! My friends started noticing it more when the patches grew, including around my eyes, so on holiday i looked like I had been wearing sun glasses whilst sunbathing!
From a lake of advice and care on my own part, I didnt take extra protection from the sun, so in the past couple of years the patches would get burnt – not very nice to have red eyes!
But over the past year i’ve been more interested in looking after my skin, and now at 24 im really considering how much sun exposure i have – even though I love going brown, im going to take the advice of staying in the shade and wearing a high sun screen.
I totally agree with Helen, that having those cute white spots add to your personality and makes you more interesting. I used to hate it when people asked me ‘what are those white spots?’ , until a guy once said ‘I really like them, it makes you who you are.’
I’m going to go to the doctors shortly, as I am too looking into Laser Hair Removal, and have worries about it with my skin condition. I love the sun, however ive been told that sunbathing can increase the loss of pigmentation in the skin of those with vitiligo – so please take care in the sun, and if you like tanned skin (like me) fake tan all the way!!
Hi Helen,
I loved your comment, especially
Brilliant advice, and I know from experience that this technique works. It may not cure the vitiligo, but it will decrease the anger and hate one holds inside, which will make for a better quality of life.
thanks again for sharing your story with us!
nathalie
Hi Helen, I learned a lot by reading your message. I also think stress is a part of vitiligo, but not the main cause. I also wish there was more research to find a cure….
Hi Lynn thanks for your answer. I have been told at laser hair removal centers that I can not have it done because of my vitiligo.
Answering your question I have never taken anything to help my vitiligo, not even vitamins and I have never been tested for thyroid problems or any other disease. So I dont know if I suffer from thyroid. I follow a mediterranean diet full of fruits and vegetables in a daily basis but I also eat junk food sometimes.
Both my parents are doctors and when vitiligo showed up they told me that very little was known about this skin condition(and at the time very little was known medically speaking about skin disorders in general) so I did not follow any treatment. I was offered corticosteriod therapy(doctors prescribe corticoids when they dont know what to do) but side effects and constant use put me off the treatment. So I just covered them in summer with thick makeup.
This is what I did about my vitiligo: I used to sunbathe in my terrace for like half an hour or more with no sunscreen on when it was good weather for many years. The patches used to get pink and I liked it(now I know this is dangerous for skin cancer so I wouldnt recommend it). Little by little (with the years) some brown spots appeared inside the marks, then fusing together. Another thing I did was to stop worrying about the white marks and everything else. And stared “loving the marks”, accepting them, and hoping some day they will get tanned. I really try not to worry much about anything, even if its really important because I am scared it will boost my vitiligo.
I believe vitiligo is stress-related, but I also think its not the cause because I got vitiligo when I was around 7-8, and I remember having a nice childhood with zero stress, not even my annoying brother caused me high levels of stress :) I dont know what made my white marks to repigment, sorry. I would love somebody will discover this.
Hi Helen, You wanted to know if someone with vitiligo ever had hair laser removal and how it effected their vitiligo spots. I have vitiligo covering a lot of my body. I had laser hair removal done on my legs. It did not effect my vitiligo skin. It did not make the vitiligo any worse or any better. But after paying hundreds of dollars for laser hair removal, I still have to shave my legs. It did not get rid of the hair. Maybe it will work for you—-good luck. I also wanted to know what caused you to repigment. Do you take any multi-vitamins with Iodine? The reason I ask is because I have low thyroid and take medicine, but I read that the mineral iodine is good for the thyroid and I am going to start taking it. Do you have thyroid problems too? Thyroid problems are related to vitiligo, my Doctor told me this years ago.—thanks
Hi,
I wanted to respond to concerns about vitiligo-related hair loss. Yes, it can happen.
I found my first white hair when I was 16. A few more followed. Then in my 20’s, I had two gorgeous white chunks on either side from the middle part of my long, pitch-black hair. People stopped me on the street to ask me where I’d gotten the perfect streaks, since no dark roots were visible.
I thought little of it, but it was the beginning of my vitiligo. It was only in my 20’s, when a botched knee operation, later determined to have been unnecessary, ended my dreams of being a ballet teacher that a newly developed spot on my neck (and in both armpits) was diagnosed as vitiligo. The discovery that the surgery was unnecessary and followup surgeries to get me back on my feet again lead to tremendous emotional stress and anger. I eventually realized that the anger was harming only me. I added meditation to my Yoga practice and later studied Reiki and NLP and the vitiligo would stabilize. Whenever I was subjected to traumas or tragedies, over the years, my vitiligo would spread. I also have some often-attendant autoimmune conditions (Addison’s, thyroid, LS).
So, for me, vitiligo was a direct result of emotional stress, with the exception of Multiple chemical sensitivities, which also affect it.
Of course, my hair turned white as the vitiligo spread and it remained very attractive until last year.
After a series of tragedies, most of the vitiligo-affected hair fell out. The remainder of my black hair turned white in the last 9 months. In just the last week, the whitest hair, on the top of my head has become so sparse my scalp is clearly visible. In just the last week, the front of my hair has receded from 1 – 4 inches. I have worn bangs all of my life. Now what? I look around and see nothing like this. It’s horrifying, depressing and difficult not to feel frantic.
I’ve taken PABA and pantothenic acid, B12, hydrochloric acid, etc. for decades (I’m a registered nutritional consultant.) I’ve used a narrow UVB lamp, LPA, meditation, and worked diligently on my issues. It is not nutritional: for 30 years, I have eaten only organic. No junk food. I’ve never drunk a cup of coffee, I don’t drink pop or alcohol, I don’t eat gluten or dairy (sensitivities) and I’ve eaten no sugar in 25 years. It’s not a matter of deprivation; I love treating my body well. I just wish it would reciprocate.
If I do, in my search, ever enjoy any restoration, I will be certain to post it here.
Hi there!
I have had vitiligo since I was around 8 and now I am 26. I have never done anything about it. Unexpectedly it stared repigmentating when I was 17, but it took almost 6 years to practically repigment all of it.
Then it came back, but in different locations. Firts it was elbow, knees, ankles and toes; now it is fingers, wrist, armpits, face, elbow again and bikini line area.
I have been offered to use Protopic 1, but i am not sure.
I have a question, may be someone can help me. I want to have laser hair removal done, but I dont know how it will affect my patches, Has anyone with vitiligo done this before? and if so, please can you tell about it
Many thanks and congrats for the web, its really good
English is not my first language sorry :))
I am sorry for your condition.You can recover if you use a scientific method to cure the disease.Wish you recover soon.
hi kevin,
you are right on the money about the need to get the word out about vitiligo. there is more talk now than there ever has been, but i am making it my mission to take it even further. a key to being heard is having a big voice, and the best way to do that is to assemble a group of people with the same strong convictions. this is why i’ve created 2 facebook pages for us. i’ve also started another project which will begin the end of this month. i will post the info here when it’s ready. i’m very excited about this and look forward to everyone’s support so we can make our voice heard around the world!
Kevin, if you have vit that long and that much why don’t you depig it?
Yes 3/4 of my face is covered, but compared to the mass of my whole body I do consider it a slow spread. I have had it on my feet, knees, groin, nipples, armpit, elbows, hands, neck, and face. I have had the spots on my feet and hands first. My hands didn’t get worse until mowing the yard and having my hands exposed to the sun for about an hour. I forgot to wear gloves, but it was 98 degrees outside and bundling all up to avoid the sun to do yard work can get extremely hot. The tops of my hands burnt and blistered and within a couple months my whole hands turned white. My face is exposed to the sun everyday, I really can’t wear a stocking mask to work. I use to use tons of sun screen and spent quiet a bit of money on the strongest protectors, but none of the seem to help at all. So the spots on my face and hands have spread the most because they have the most exposure to the sun, but the rest of my spots have spread slowly. 25 years of having vitiligo I have learned a lot. I am Caucasian and staying out of the sun has made my skin lighter and it blends a little better. I was shopping a few years ago and saw an African American lady that had vitiligo also. I just wanted to give her a hug. 50% of her body was covered, and I felt guilty for thinking I was glad I didn’t have dark skin like her! You can tell I have it but I can be overlooked because I blend pretty well. There was no way for her to blend. Half of her was dark, the other was white, You could see it 40 feet away. I can’t even imagine what she has went through. I just hope her heart is strong. I have always worked in the public eye and have always caught people looking me over trying to figure out what happened to me. Kids are usually the honest little talkers that just blurt out, “what happen to your hands and face”. Adults usually think I was burned in a fire, and ask me questions about it. All these things use to just make me want to die. Then one day a little girl tried to help me rub the white spot of my hand, and it made me laugh. I have finally got use to the comments and questions, because I don’t consider myself ugly either! But I do hate the limitations. Not being able to enjoy yard work, go to the lake, or many other things because I am trying to protect my skin from the sun. Another thing that I find embarrassing and the hardest is being in a relationship and trying to be intimate or sexual. Our society has based sexual attraction on mainly looks. Not saying feelings aren’t a big part of an attraction, but sometimes you just want to feel and look sexy. It is hard to feel and look sexy when every time you remove a piece of clothing you reveal another white patch or “burn scar” as others have called it, especially on the groin area. Well, enough said. If you get me thinking I will eventually have a book written in one little comment box! So I leave you with this. If there was something that really worked, Don’t you think someone like Michael Jackson (if he actually had vitiligo) with all his fame, money, and power, would have found something that worked? Don’t go broke trying to fight it! Instead, start writing letters and making calls! We need to flood our health care providers, the National Vitiligo Foundation, etc. with our concerns, our feelings, and our set backs because of this disease! Support Groups and chat lines are great, but we need to show them (prove to them) that this is not only cosmetic! We need to be heard and taken care of!!!
thank you for responding. and i know how you feel, kevin. its really hard to live with this. i dont think im ugly or anything now but when i look in the mirror i just dont see me anymore and i dont understand why it happened to me. every thing was perfect before then i was in a car accident at 16 (i was modeling at the time) a month or two after i noticed a spot on my eye it spread so fast. my life went in a completely different direction. some times i get really upset about it that i cry alot. i dont like to go out or leave my house. even though i have good makeup (dermablend) that covers it, it still hurts to have to apply it. i hope every thing will get better for you keep your head up :)
Rein & Nathalie:
I too have had this concern!!! I have had vitiligo since I was around 6 and I am 31 now. My patches have grown slowly, and most have only started if I sunburned too badly or get a scrape. I have noticed where my white patches are, my hair has thinned quite a bit! I am a pretty hairy guy from head to toe, and my under arms are almost hairless now since the vitiligo set in and they weren’t before, and almost hairless on the white patches on my legs. On my face I use to shave almost every day, and now that 3/4 of my face is covered in white patches, I have complete bald spots that are pretty large. Vitiligo has not reached the hair on my head, but I have been wondering the same thing for years now! I use to go to doctors, and try treatments, but I quit about a year ago. I can only spend so much money on things that don’t work and the only answer I get is there is no cure, but here is something new to try and it is only $800 a bottle. No insurance will cover it calling it cosmetic. WHICH IS HORRIBLE and a lie! It is bad for our health! Mentally with physical limitations! It is almost like I have sit by for years and watched this disease slowly eat my skin away turning me albino! I could never go to the lake with my friends or boating because I would burn and blister. How about the mental anguish it causes when you have to stay inside hiding from the sun like you are some sort of vampire? I can’t even mow my yard without 4 bottles of sunscreen and I still burn with blisters on my white patches! What if we were suppose to get a job outside as the only way to support ourselves? That is why I love finding others online and read what they have to say. It is free, and a sign of hope. But is that all it will ever be?