Hey guys,
After having my daughter in December of 09, My skin started loosing it's color. My insurance ended in March '10, so I was then uninsurance. My skin within the past two years has really started to depigment, in my armpits, on my hands, around my eyes, and mouth. My friend who is a nurse gave me her diagnois...but I decided to finally pay out of pocket for insurance just recently and saw a derm. He prescribed me creams that he told me straight-forwardly would not work, that it would spread, and with being out in the sun it would burn. He told me he could not do the lights because he feels they are a waste of time and does not have them at his office for that reason??
I am going to see a different derm in Chicago next month...just to talk to someone else about it.
So to everyone who has it, who deals with it everyday, who may have some comforting words, or to anyone who is using something that is helping PLEASE send advice this way. I am starting to have a hard time dealing with it recently.
Thanks!!
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Aside from the great advice listed above...also work on reducing your stress.
Hi btw! :)
Your vitiligo may spread BUT it also may not. Some people have it in one area and never get it anywhere else. Mine is progressive so I can really empathize with that. I an learning to love my body no matter what it looks like. We tend to think its worse than other people do. My father had vitiligo all over his body by the time I came along so I have the experience of thinking he looked just fine. I also knew a girl with it years ago and met someone with it on his face in college. Honestly I think it makes people look special and unique....but when I got it? Holy crap it was a different story. It has been a roller coaster but ultimately I know I am still beautiful and possibly more so now that I have spots. I have my good days and my horrible days and you will to. There is a grieving and acceptance process involved. Its normal. Get emotional support (therapist, friends, partner, family, workshops, meditation groups, etc. etc.) And give yourself permission to grieve. Acceptance doesn't mean not taking care of yourself. Start UVB treatments along with either steroid creams or protopic. Don't trust doctors who put personal opinion above best practice. You are right to be suspicious. Vitamin D, folic acid, AND B12 are the basics.
Personal opinion I'd stay away from vitamin C and echinacea or goldenseal (immune boosters at this point will make it worse. Your immune system is attacking your melanocytes...don't boost it...it will only attack them quicker). I did a vitamin C flush and went from having vitiligo in one small area to having it spread all over my body.
You can do this. Your view of yourself is changing. How you know yourself to be in the world and how other people relate to you. Focus on the basics. Eat. Sleep. Move your body. Ask for help and use specifics. People don't know how to respond and it helps if you can give them ideas of how to help. When things were really bad, I literally told my partner to hug me at random and say, "awww". It sounded so contrived, but it worked. She even did it in a joking matter and I would hold on and start crying. She got the power of it pretty quickly. Think about what you're needing.
I wish I had the words to make it better. It is scary. No matter what anyone says to you you'll feel scared, but know that it gets better. Even if you can't see how right now, trust that it gets better.
Sending you love and hugs.
what a rubbish doctor! there is hope ....protopic cream combined with UVB light. If you have small spots buy a hand held unit. Change your diet to pure vegan and take vit D(except in summer), B12, Gingko Bilbao, fish oil. The most important of these 2 are diet and UVB (or natural sunlight). Google autoimmune diseases and diet. I have had it for 30 years and it is extensive and I am seeing a lot of regimentation....oh and I feel great through the new diet. It feels daunting at first giving up meat and dairy but embrace it and there are fantastic meals to be had. Limit amount of wheat as well. Good luck!