Hi there! I'm brand new to the site so I thought I would introduce myself. My first sign of pigment loss was noticed in 2003. It started as a little white patch that appeared on my left hand (I was right out of college working a really high stress job). Over the course of the last 10 years, It has progressed pretty quickly. My hands, feet, underarms, hips, my special places :) .... and most recent - under my right eye and below my bottom lip. I'm ok with it now and stay pretty pale. My fiance loves me and isnt turned off by it. In the summer months some people will notice my hands or under my arms and think that I was burned. If they havent seen me in a bit they get all concerned ... but If I dont have time to explain I just say something like "I'm ok... I'm just tie-dyed!".
To be honest, I dont know much about my Vitiligo. I went to a Derm Dr. once and had a pretty bad experience. She came in the room and I told her that I wanted to know more about my condition and what I could do or what options were available to me. She had the WORST bedside manner that I've ever witnessed. She raised her voice and said.. no lie... "You have an autoimmune disease do you know that?!!!" I told her no. She said even louder "well, you do! You have an autoimmune disease!" & I didnt realize that it would be considered that. I asked what I can do and she said "Nothing. I can't do anthing for you. I dont even know that much about it but you being outside is worse than sticking a newborn baby out in the sun without any protection. Because at least babies have some kind of pigment!". She told me to wear sunblock and come back if I could find a way to notice when i was having another "loosing spell" and then "maybe" she could help me. I explained that I have really really sensitve skin and that sunscreen on my face makes me really breakout bad. She said "oh well - you have decide which is more important." I asked for brands or anything that she would recommend and she told me to go to the store. I was at a loss for words. I'm normally the kind of person who stands up for myself (at least I thought I was) but how she reacted to me was shocking. I mean, I know that I'm not crying over my pigment loss, but show me a little respect when I'm trying to find out more info and take care of myself.
Anyway, since that one visit... I havent been back to a doctor about it. She was one of two dermatologists in the area that take my insurance. I google some info every now and then. I bought a pair of sun protection gloves when I drive in the summer, I try to remember sunblock and really avoid direct sunlight. But that's about it.
I dont know if the fact that my hands and feet ache and itch when being out in the sun for even 5 minutes is normal, I dont know how to tell if I'm having a "flare up" or if everyone else's hair "down there" has turned white too from it... I'm not sure what brought it on, if it's genetic or if I should be doing more.
So, I'm glad I found this site. Thanks for letting me share :)
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Lying half naked on a hospital bed in Emergency Dept (at the time for a suspected kidney infection)... the consulting doctor looked at my body, stifled a laugh, then looked confused, and said 'oh yeah, yeah that's that Michael Jackson thing"..yeah right....
....RIGHT...... thanks.....
He then told me they were going to scan me to look for tumors. "yeah its pretty crap, my friend is 44 and on to his 6th surgery..and doesn't look like he's going to make it".
One of the shittest Monday mornings of my life.
We can't rely on doctors to 1) know everything 2) give the emotional support we need. They are scientists in most cases with 7 years schooling, who have to make 'educated' diagnosis' within often very short timeframes.
2 and 1/2 years on, i am healing.....healthy, thriving, i have started to repigment...avoiding hopsitals as much as possible by looking after my nutrition.
haha. oh and when my 6 y.o. niece asked if my skin was burnt i said,...noo i ran so fast my colour fell off.... hahaha. she still doesn't know if i was joking or not. hahhaha
I love your comment about being tie dyed :-)
My dermatologist referred me to NYU Medical Ctr where I the resident told : "Do you realize that you're Caucasian?"
After overcoming the shock of the news, I realized that dermatologists were going to do zip for me.
It started on my neck. I used to tan pretty good and the part of me that hasn't faded still gets tan just by stepping outside even with all the block. So I look ridiculous in the summer but what can you do?
Even when NY Magazine does their story on great doctors when you look at the dermatologist section not one mentions vitiligo.I don't think there's a priority for us the 1%.
I feel your pain..... I HATE the summer. I also agree 1% is not the priorty and I don't think ever will be!! Vitilitgo sucks for everybody ... regardless of your skin color!!!
It sure does! I wish those celebrities that have it would use their voice into helping bring attention and research to vitiligo.
Hey :) I actually have an AMAZING Dermatologist (lucky I guess) He helped patent the name of Extrac Laser to Vitiligo. First of all my "special places" are also white, so no worries. I live in Florida and they have a program for children in my area with Vitiligo and I get a lot of info from them also. As far as I can tell, most doctors have no idea what Vitiligo actually does. We are all aware that it destroys your melanocytes and inhibits the production of melanin (skin pigment.) But no one knows why or the cure. Some doctors say don't go in the sun, others say small amounts are fine. When I go into the sun my white patches on my face get burnt and turn a bright red. I went on a twelve mile bike ride the other day and it literally felt like the sun was cutting into my face with a scalpel where I have vitiligo, Thankfully my sister gave me her hat to cover the burning area, Im not sure why this happens sometimes but I try and avoid the sun at all costs. I have been told by my doctor that it is genetic (although i don't know anyone in my family with it, and i'm curious as what the chances are of my children getting it) I have vitiligo on my hands, feet, eyebrows/eyes, upper lip, forehead, special places and underarms, lately its been spreading on my torso, I've had it for 2 years :) Hope this helps some...
I don't know if this helps at all with the question of genetics, but you can get vitiligo if you have a history of autoimmune diseases in your family (diabetes, lupus, rheumatoid arthritis, Hashimoto's, alopecia, etc.). If you have vitiligo in your family, your chances of having vitiligo may go up, but you could also get a different autoimmune disease...or nothing at all. There is research being done on this, but for now we know that much. I don't know thechances of your children contracting it, but I have heard doctors say that it is not as common for people with vitiligo to have parents with vitiligo as it is for them to have another family member with it. It runs in my family, but my dad was the youngest of six and no one else got it (his father had vitiligo) and I was the youngest of 2 and I got it. The odds are in your favor that your child won't get vitiligo, but you never know. I would think it would go up if you had 10 kiddos, but I wouldn't worry about a couple :) My family is a very unusual case having a direct lineage of vitiligo in that way. Hope that helps.
I also get very itchy skin shortly before new patches appear.
I live in Hawaii and am in the sun all the time. My child and I have had only 4 sunburns in 3 years. I tried Blue Lizard and got burned bad and I reapply. The only sunscreen I use is Badger. We never get burned usuing it and it won't cause cancer like some sunscreens that are loaded with harmful chemicals. This is a good site to check out sunscreens and products- http://www.ewg.org/skindeep/
Enjoy your summer!
How bad was his Vit? Just wondering how bad your vitiligo can be and still repigment. Starting Xtrac laser therapy in a couple of weeks..... hopefully!! :-)
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