and newly diagnosed, just this week by my regular doc. I am devastated to say the least (my vit began with a sizable patch on my forehead back in September which evenutally got white, prompting me to get bangs, and has spread to around both eyes, both lower cheeks (near my ears), and my chin, beneath and around my nose, and a couple of areas of my neck, as well, soo far. Lord knows when it will stop spreading. It seems I find new patches/spots daily and it's awful.
The thing that really is killing me? The itchiness that comes with this, and knowing that everytime I feel an itch, most likely that is, yet ANOTHER patch forming on my face!!! I WON'T scratch even if it kills me, and don't, yet I sit here typing this still knowing that this damn thing is doing its damage, I have no way of knowing how MUCH it will spread, when it will cease, etc. and now it seems as if it has spread to my elbows/lower arms. All of this in less than one week!!!! Although I DO work with a lot of merchandise/cardboard boxes at work, so that could be irritating my arms also, could just be me being overparanoid.
I try to remember also that I am now wearing a strong sunblock, and two layers of makeup to hide this as I work part time right now in a very brighly lit retail store (which is NOT easy for me to do, I am soooo self consicious about it even with the make up and think people are starting to notice it now, both coworkers and customers) so the makeup could be causing the itchiness too, but I think I am in denial about that. I have done nothing but read up on this condition for MONTHS and it really is a hard thing to accept. I can't sleep at night very well at all (I work VERY early morning shifts) as I panic over having to be in a brighly lit store and worry that I will miss areas in covering up before I leave the house. I am also about the end partial unemployment in a couple of months, am raising a preteen on my own, and have no health insurance currently, and am job searching for another full time job with no luck so far. This has put my self-esteem in the gutter with job searching, with has been hard enough. I have to ask myself if the interviews that have come to nothing have to do with this at all, despite the fact I use makeup to cover it. :( (my normal field is white collar, where looks matter). I feel like a vampire as the sun makes it MUCH worse, even in tiny doses, even with sunblock, so I avoid it like the plague these days, and wear a hat and sunglasses the few minutes I leave work to go home. (I am picking my daughter up from her father's today AFTER the sun goes down, on purpose so I don't have to drive while it's out).
Sorry for my little rant there, I just am so happy that I discovered these forums, it makes me feel better to know I am certainly not alone in this! I just wish it were anywhere but on my face! (although I am positive it is hard to deal with ANYWHERE on the body). But your face is the first thing people see, so it's very very hard to walk around with it right there all the time.
I did have a question for all of you. Seeing this thing seems to be most active right now, would getting lots of rest, taking vitamins, etc. and eating better possibly help slow it down/calm it down? I have so many questions and feel so helpless. Thanks in advance!! I read someone's post about folic acid, Vit C, B12, and Ginko Baloba and plan to try this, anything is worth a shot. Thanks!!!
Replies
Hi Tina,
Welcome! My six year old son has Vitiligo and his dermatologist has him using Protopic. We have been using it now for six months and his 'spots' are nearly gone!! The first few months of use I was skeptical because we didn't see any improvement but we kept using it and it is working now. I hope this info can help you in some way.
Thank you Sherry, so happy to hear your little guy's spots are nearly gone!! :) Was it hard to get the script for this? I don't have another derm appt. until the 29th, the first available I could get, and I plan to push hard to get this. Meantime, I am using a LOT of cover up makeup! lol!
Not too hard to get at all. The pharmacy we use did not stock it the first time we needed to get it. But since then they keep it in stock. I hop it works for you as well, good luck!
Thanks Sherry!!! So hopeful about this! To hear there is SOMETHING out there that brings pigment back brings me something I haven't felt in a long time since this came about...hope...:) Hugs to you and your little one.
Hi! Welcome! You are right that it is totally scary at first, and some people do learn to accept it. Just keep doing the research that you are doing and enjoy a healthier life style. If it's not going to help your Vit, at least you will feel better. Something I learned about my Vit was that I couldn't keep avoiding the sun so much. Some people here believe that some sun is good for your Vit. And also, you can't make yourself miserable by avoiding it. Just remember, this is so much more of an emotional disease then physical one. I deal with the pain everyday and people tell me to just get over it, but the lack of control over my body is really hard for me to handle. Just know that you are not alone in this. We have all gone through these emotional issues. The one thing about your post that really concerns me is your itchiness. As far as I know, Vitiligo isn't suppose to itch. In fact, Vitiligo often gets confused with a yeast infection on the skin. I may look into that more if I were you.
Thank you for all the tips and advice, this is just freaking me out so badly it is not even funny, although I suspect we all feel/have felt like that, especially in the beginning. It's just that mainly, right now with the job market and being out of full time work, this is the LAST thing I expected to have to deal with honestly. I am struggling as it is/was to find work, and this just adds a whole new dimension to what I will feel comforable applying for (which has been everything up to now), and will limit options further. :( Just a bummer in so many ways. If I could honestly just find something to cover it up properly for now, it would be ok, but that is proving to be very difficult if not impossible as there as so many different "hues" it's like a damn jigsaw puzzle! Can anyone recommend a fake tanning product that works well coverage wise but doesn't look "orange-y?" Thanks in advance!!
It is totally normal to feel scared. I hope that you can come here when you feel upset. I know that I do and it helps.
I put makeup on my hands which are 80% depigmented. I use dermablend which is super expensive but it lasts a long time. I have really fair skin and it always looked very orangey on me. I would put on my makeup and a half hour later it would look horrible. Part of this is because makeup is oxidizing so I use a color corrector from Coastal Scents. You should really check out Janine on YouTube. She does makeup tutorials and reviews for people with Vitiligo. She's the one who told me about the color correctors. Her YouTube username is makeup4vitiligo.
Yes, her videos are wonderful! I plan to friend her on here as well. Thanks very much, I enjoy watching her work her "magic" with makeup! It's pretty amazing!! :)
Poor you, my heart goes out to you but please dont despair as there is hope. Yes start taking all of the things you mentioned and I woudl recommend Protopic as well - it has worked wonders for me and cleared all the patches on my face - it works best on face and chest. DONT avoid the sun as you need it to stimulate the pigment and it will help a lot but dont get burnt. Early morning and late evening sun is best so try and get as much as you can.
DONT PANIC - it will make it worse. There are lots of things that will help so turn your energy into positive thinking. Try eliminating gluten and dairy frm your diet or at elast cuttting down. I also dont eat meat anymore as it si difficult to digest and the theory is that most issues come from the gut and people with vitiligo commonly have digestive issues.
Get the doctor to run blood tests on vit and mineral deficicencys ie copper, zinc, b12, folic acid etc and Thyroid and otehr related auto immune issues
Most of all be strong and dont let it take over your life and change what you do
good luck
x
Caroline, thank you so much for your reply. Does Protopic require a prescription? I have heard a lot about it on these boards and wondered how it works? It's hopeful that I have heard a lot of people say it's helped them get some pigment back. Right now, I have severely limited my lifestyle. I am terrified of going out in the sun, even though I always use a spf 45 sunBLOCK at all times, wear sunglasses and a hat, but I STILL get new spots on any areas directly exposed to direct sunlight, impossible to avoid it while driving!!! It comes in through the windows. I have a large pinkish patch just as of yesterday on that side of my face (that wasn't there before) that is very very distressing to me, it's BIG and curves down into that side of my nose. I think it will be impossible to keep covering this with makeup it's still VERY noticable even with three coats of makeup on it, it's gotten that bad. :( I feel like giving up, honestly. I hate the way I look and I used to take pride in my appearance, always wore makeup, always did my hair, jewelry, perfume, etc. Now I could honestly care less. I only put on makeup to hide my disfigured face, and as a default HAVE to wear the rest of it so I don't look lke a vampire or too weird. And people at work still stare at my face funny, as it shows BIGTIME under those damn BRIGHT ass lights!!! :( :( I hate this so much, I feel like I am being punished and don't know what I did so badly in life to have this as a sentence. Funny thing is, before now, I never wore full face makeup, hated the way it looked and felt, just used powder and lightly. THis feels like a kind of prison sentence in a big way. Anyway, sorry, I am newly diagnosed and so depressed I don't know how to deal with it.
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