I just wanted to update (hopefully quickly, but knowing myself I doubt it haha!). I've been told over and over again that what I have (severe hypopigmentation) is NOT vitiligo, however I don't totally agree or believe that that is true. This all started for me with a white patch of uncolored, white skin on my forehead TWO years ago. Since then, although the patch is still there,it is not as noticeable as when it first appeared, BUT I have "acquired" very very white looking skin all around both eyes (much worse on my left eye) and eyelids too, now I have a "new" patch of "white" line on my inner eye socket, NOT a pretty look at ALL.
It hasn't gotten better and I have tried nearly everything (creams, ointments, bio oil, cocoa butter, Nu Derm, avoiding the sun like the plaque and always that stupid sunscreen (I say this because it ANNOYS me that I have to slather that crap on every single stupid day and I hate and resent it). I have also tried various cover ups and with summer coming, self-tanners which don't seem to "stick" to these seemingly scarred/white areas. They just make them look brown/bronze and not ever evenly so I think that is a no brainer that it doesn't work for me anyway.
Anyway I think in my case, whether this is truly vit (I have always and still believe it IS since it has not improved, gone away and has spread since I last posted here, but only on my face), it is still something that is hard to deal with nearly every day. I hate that this has happened, I ask questions of my family (e.g. mom) about getting "ringworm" at 2 years old (don't know how long that lasted) and if this could possibly be related to that, no answers to be found only "I don't remember that very well." I also tested positive for a TB skin test when entering college years ago and was put on a round of two meds for that for nine months. TB is also autoimmune if I am not mistaken on this. Then I got the "all clear" to attend classes on campus and that was that. So I thought. I also had very low iron in high school that would cause me to pass out often, and had to treat that way back when with straight iron vitamins.
Suffice it to say, when I put all of these things together, it makes total sense to me this is NOT merely hypopigmentation (SOME is and it IS from sun damage, how fun and lovely NOT!) but surely not ALL (some is whiter but itchy and looks like psoriasis or excema to me). I looked in the mirror this morning and started (could not stop) crying at how awful I look without the constant heavy makeup I wear EVERY DAY to try to hide this (covers some but not all, and again with that I have tried everything, from MAC to Dermablend, to mineral, name it, I have tried it). Nothing will ever take away the fact that this is there, it's not going away, and I cannot do anything to "treat" it, not without health insurance (four years now), viable full time work with affordable insurance (going on over THREE years now), etc.
Am I just rambling on and on or does anyone else relate to this at all? Sorry, I felt so sorry for myself this morning, I was crying hysterically for about a half hour and have been thinking "why bother? It's permanent there is NOTHING I can do to make it go away or get better, so what now??" Some days, like today I feel I can barely function because I feel like "what's the use?" Does this make any sense at all, and thank you for reading this novel-length post!
Replies
Hi Tina, thanks for sharing :) I just wanted to share that i also (currently) have to take TB medication due to being exposed to someone who has active TB- skin test confirmed this. So i am not contagious or sick, the treatment is six months as a preventative treatment in the hope it never becomes 'active' in my lifetime.They say that taking the meds reduces my chances to like 1% so I decided to take the meds, although i was unsure if it was a good idea due to my vitiligo. Its not autoimmune as far as i know, its highly contagious disease of the lungs caught only through airborne coughing. Luckily the treatment is available and effective now days. I questioned the doctor about it causing my vitiligo to worsen, they said there was no evidence to suggest this- only that those who take immunosuppresants (as some of us are) are more susceptible to getting active TB due to the immune system being suppressed. So I was discouraged from taking this treatment currently. I have noticed spreading on my hips since starting the medication, but they say it could be from anything (stress?) so theres no way to confirm any links! take care , all the best
Jessica
Jessica thank you for replying. Weird this whole tb thing right? I am so desperate for answers on this I have not left anything at all unexplored or looked at. It's strange that for me, when my white patch first became noticeable, the following winter (only about 5 months later) I broke my wrist badly in two places (required surgery to rebuild it from the inside, it was shattered pretty badly) everything picked up speed over the next several months AFTER that and now here I am, and it's NOT getting better, it's gotten worse. :(
Thanks to all of you, it helps a heap to know I am definitely not alone in how I am feeling about this. I cannot find a full-time job to save my life, I don't even get (barely) callbacks anymore, and the ones that do call me back see me, make we wait and always turn me down (I highly suspect not only is this why I cannot GET hired anywhere else, I also think it is why I got released from my "last" job, because of how I/this looks, I can't come up with a better explanation that makes any sense).
Just this afternoon, I've noticed that the OTHER side of my nose/nasal area (nearest my inner eye) has also lost pigment and that also seems to be spreading. :( I am so beside myself, I just don't see or know how I can possibly keep dealng with this, see I have a daughter, who suffers seeing ME suffer constantly from this (I rarely if ever leave my house NEVER open the blinds or let light in here, and we just don't live normally) plus I don't/can't work full time, I don't care about anything anymore (there are currently dirty dishes in my sink, at least three or four loads of clean laundry that I haven't touched aside from "doing them" for days, and I just have no desire/excitement to do anything anymore. I barely function and am happiest when passed out with sleep, I have no pain or tears then. I have seen THREE different derms, none have offered any solutions (except for laser, I cannot afford laser, no insurance and every visit to be told the same damn thing, with no viable solutions is not only expensive at over $100 a pop, it's discouraging and a waste of time and effort). I have seen countless aesthiticians, who all want to sell you an overpriced "skin care" line to make a profit, and also don't offer anything viable as a potential solution. some have looked at me with pity, no other way to put it and it doesn't help they are all young and gorgeous with perfect skin (made MORE perfect by the procedures they get done for free working there). To see some pathetic person like me, is more $$$ to them, nothing less or more, as they see a profit from their latest and greatest "skincare" line to improve things, NONE of them work however.
I am thinking of resorting to buying Protopic online (Canadian pharmacy no script required b/c it's in Canada) and just freaking DOING it, I am that desperate, and sick and freaking tired of watching this mess (as bad as it looked in the beginning) just spread more and more. I look like someone you would see who you just found out has cancer or something and take in your breath and go "OMG, they look AWFUL!" That is how I look every single day and it's getting worse not better.
K Harrison, could you PLEASE share WHAT cream you are using that is working??? It is MOST helpful to those of us who DON'T have any repigment (and continued spreading) to know what DOES work (specifically) for others so we can try it too.
Thanks for all of the responses and support. This is like a nightmare I cannot wake up from.
Hi Tina,
I can totally relate. I am 21 and was diagnosed last year and it has taken a real toll on my self-esteem. My vitiligo spreads very quickly, probably due to nursing school stress unfortunately:/ I have never heard that it was related to TB but I have heard that it is related to stress, genes, and thyroid issues. So you may want to get blood work done to check for a thyroid problem. My friend who has vitiligo also has hypothyroidism and they have just found that i am borderline hyper. So I definitely think thats worth looking into. Lately ive been canceling plans with friends and feeling really bad about myself so I sympathize and am very sorry you have to go through this:(. your "hypo pigmentation" sounds like vitiligo to me esp since you have it around the eyes so I would recommend going to a dermatologist. My Dr. didnt understand anything about vitiligo she told me I had tinea versicolor and prescribed me anti fungal meds w.o even testing me. So I said screw this im going to a dermatologist and was diagnosed right away. Now I am treating with broadband UVB phototherapy which is slowly re-pigmenting my skin (even though I am simultaneously losing pigment) but it would be very expensive w.o insurance. Something else ive looked into is "microskin" which is makeup airbrushed on that has a synthetic base so it does not rub off and you can even swim with it! I dont have it myself but im thinking about getting it here: http://www.microskincenter.com/ dont give up theres still hope! :) I wish everything works out for you
Hi Zoe, like I stated in my reply above to K Harrsion I have NO health insurance so and I have wasted many dollars on derms (out of pocket NOT CHEAP), so that is no longer an option for me. I was also mis-diagnosed (walk in clinic doc) with tinea all that the sulfur lotion managed to do was to burn my face it didn't help at all probably made things worse if anything. I only dream of UV therapy which I cannot and could not afford ever with no insurance, so I wish you luck in your try at this. Hope it works for you!
Hi Tina,
Your post caught my attention because my vitiligo started as a white patch of skin on my forehead. I went to a dermatologist because I was unsure of what it was and he told me it was vitiligo. I had numerous tests done to be sure of it and also an attempt to find what caused it. I wanted answers because I have had medical issues throughout my life and would feel some satisfaction if I knew what the link was. I know there are only theories on the causes of vitiligo, but if there was some link to any of my medical issues it would have been great. I have thought and researched any possible links to medical issues, but unfortunately I haven't found one that is legit enough.
I know it can be frustrating. I have spent numerous hours crying as well and I have never been a girl to wear a lot of make-up before the white patch appeared. This past week though I went and lived my day without any cover up make-up. (It was mainly because I was running late, but hey). It felt good and even though I was scared, nothing bad happened. I am on a new treatment and I can only hope for the best. Good luck.
ive had days where I have cancelled plans with friends , as I feel terrible. I look in the mirror on those days and hate what I see...so I can definitely sympathize! then I have days where I am not fussed.... ive had this since I was in my early teens , and im now 34! I am now finally using a cream from my dermatologist that has started to repigment my face!! I stayed away from any treatment, as im married and knew I wanted a child one day..as these treatments seem to have side effects, including on fetus's etc...now I have a child ( my boy is 8 months old) I have started my path to finally try and get this sorted! seems the first cream I try, has finally given me some relief..have you tried going to a dermatologist? id suggest going, as there are many treatments out there. some don't work for some, but they work for others. its worth a try!
Congrats on your baby. Please DO share with the rest of us WHAT/WHICH cream?????!!!!! So we can try it too as everyone is different and what may work for you may not work for us but it helps to know WHAT is working for you. Been to MANY derms please read below cannot afford to continue, NO insurance. No full tme job so not viable or possible.