Vitiligo around my eyes and lips under black light
Vitiligo is a cosmetic skin condition in which there is loss of pigment from different areas of skin, resulting in irregular white patches that feel like normal skin. Joint areas and parts of the face are frequently affected. The cause is mostly unknown and, even though researchers think they have a clue, any treatment is extremely tedious. Michael Jackson famously bleached his skin white to “hide” its symptoms. Vitiligo affects about 1% of the population.
My personal battle with the disease has been going on since I was about 11. I developed small patches on my knees, eye lids and chin. It went away fairly quickly on its own and returned again in my late teens as a tiny white patch on my knuckle. Again, it went away on its own. Then, when I was about 23 it came back with a vengeance and I’ve been dealing with it ever since.
When it spread this most recent time, I didn’t notice it right away because I was staying out of the sun and had fairly pale skin. The white spots were able to grow without much attention for a couple of years. As I started spending more time in Los Angeles I got more sun and was shocked at how much of my skin was affected. This time it didn’t go away on its own. This time I had to actively fight it.
Lucky for me, Dr. Grimes, someone on the front lines of pigmentation diseases, was practicing in Los Angeles. While other doctors might brush off vitiligo as simply cosmetic, she is truly simpathic and dedicated. Her treatment involved using several prescription creams regularly and narrow band UVB light for 5-8 minutes a session. Right off the bat I didn’t keep up with the creams because I could never stand anything like that on my skin. The light treatment was sort of a hassle because I needed to come in 2-3 times a week and, as a cash patient, pay about $100 each time. Still, I kept regular appointments and after several months the spots started receding. Unfortunately the speed in which it responded is what made me start missing appointments. I felt it was under control and the initial panic left me.
I became an on-again off-again patient. Coming in for treatment anytime I got a suntan and started to freak out. Eventually I even got a personal light unit so I wouldn’t have to travel 3 times a week and pay for treatment. It cost about $2,700 but if I kept up with my treatment I’d quickly pay for itself in saved bills and convenience. Apparently that wasn’t enough because I failed to maintain even the simplest routine.
It’s been nearly a year since my last light treatment and easily over a year since any regular schedule. The vitiligo is spreading like wildfire. I’m freaking out. This isn’t cool. I don’t really mind it on my hands and other parts of my body but my face is seriously starting to look like The Joker. While it’s currently only slightly noticeable in normal light I’ve actually resorted to using a little makeup in desperate self conscious moments. What the hell am I going to do if I actually get some sun? I’d be totally screwed! The worst part is when I first restart the light therapy it’ll tan my skin making the spots even more visible. To get better I’m going to look worse for several months. Ack!
Fuck it, this can’t go on. I have a light unit right here in my house, Dr. Grimes is local and my schedule is flexible. Yes, UVB light can cause cancer but I’ve got to fight this thing hard until it fully disappears. Going back and forth like this only prolongs the treatment which increases my exposure and risk. I’m calling for an appointment this week. No more bullshit excuses. No more flaking on treatment. No more Joker face.
Below are pictures of my left hand as the spots progressed and my home UVB light box. Since my skin isn’t as tanned, I had to take the more recent one under a black light where the spots show up much clearer. I’m suppose to use the UVB light box 2-3 times a week for about 2 minutes on each side of my body (like a damn roasting chicken) and slowly increase to 8+ minutes over several months.
Update 1/4/2011: Motivating Results - I saw Dr. Grimes on September 28th. After greeting me with a warm hug she looked over the “damage” and put me on a treatment plan. I got a cortisone shot and went home with a prescription for Clobetasol Propionate and a schedule for my light treatments which gradually increases in intensity after each session. I’m at 3 minutes and 30 seconds now.
It’s been about 100 days and I’m noticing improvements all over. Around my lips and cheeks the color has started to slowly creep back. My elbows are showing lots of freckles with parts so dense they’re almost filled in. On my hands I found 1 or 2 clusters of spots that I hope will combine to form larger patches of pigment soon.
My left hand with vitiligo in Aug 2006
My left hand with vitiligo in Aug 2010
My left hand with vitiligo under black light in Aug 2010
Daavlin UVB Light Box
