I'm not sure I have ever spoken about this before, but I have a condition known as vitiligo, a chronic autoimmune disorder that causes patches of skin to lose pigment or color. It is most notable in darker-skinned people. Some fair-skinned people have it, but it is not noticeable unless they get a tan. I have a light olive complexion, so it is noticeable on me. Most people notice it on my hands. I have very little pigment on my fingers. There are other places where it is, but we will not discuss that.
Recently, there have been some models who have been seen with vitiligo. I think a Gap commercial, or a similar store used a model with vitiligo in one of their ads. It's even showing up in gay porn, which I find shocking. The picture above is the Cocky Boys model Theo Brady. Looking closely, you can see that it affects his legs and around his waist. If you watch one of his videos, you will see it more prominently in other areas of his body. This was the only picture I could safely show on my blog.
So, why am I telling you about this? Throughout my life (this started around puberty), I have always been told there is no effective treatment or cure. Recently a new drug has been discovered called Opzelura. The medicine is a cream for the treatment of chronic treatment of mild to moderate eczema and a type of vitiligo called nonsegmental, which is what I have. A thin layer of the cream has to be allied twice a day to the affected areas. Also, the treatment can take up to a year to see any repigmentation.
My vitiligo has been a source of embarrassment for me since it began. The depigmentation has accelerated in recent years, though it is still only in certain places on my body. Many people have asked me what happened to my hands, and I tell them it's vitiligo. If they are of my generation or before, then I can tell them it's what Michael Jackson had before he had his skin bleached. Skin bleaching used to be the only "cure" for vitiligo, but it was only used in extreme cases.
Once I heard about the medication (thank you, Susan), I talked to my doctor about getting a prescription. He referred me to a dermatologist. Initially, my appointment was scheduled for September 27, but I was told to check for cancellations. On Monday, I found a cancellation for Tuesday and made the appointment. I saw the dermatologist, who told me that it had been proven effective in some people and was worth trying.
It has some possible side effects like all medications have. One of them is that it causes acne where it is applied. She said we'd treat the acne if that were the case. The dermatologist told me to try it in a small, affected spot for two weeks and see how I reacted to it. If there are no problems, then we will continue the treatment. So then, I had to get it approved by my insurance. Amazingly, my insurance company, which denies everything, quickly approved the medicine, and I am waiting for my pharmacy to get it in stock today.
It can take up to twelve weeks to a year to see any improvement, but I have my fingers crossed that it will work. I am excited because there has never been the slimmest chance of hope before, and a treatment has finally proved effective.
Good luck hope it works for you. Hope Isabella is well and having fun.
ReplyDeleteI can empathise how distressing it can be to live with a skin condition that is so prominent, not from the point that it matters at all, but moreover other folks reacting to seeing it in various ways, sometimes overtly over sympathetic otherwise offensive but that’s just being embarrassingly human I suppose? I have a congenital condition where I am displaying raised cysts all over, folles immediately think it’s infectious or a pox of some kind, no as with most skin disorders it’s just in this case ‘me’ ! Stay safe and happy guys.
ReplyDeleteHugs from Bob in the UK
I hope the treatment will be effective without side effects.
ReplyDeleteCats too! A black cat with vitiligo turned almost entirely white in a year https://www.ulyces.co/news/atteint-de-vitiligo-ce-chat-noir-est-devenu-presque-entierement-blanc-en-un-an/
In France, Édouard Philippe, former Prime Minister is suffering from vitiligo which makes his beard white
Bobbert, I had a boyfriend several years ago who had sebaceous cysts. It really want that noticeable but you could feel them. His skin disorder wasn’t as noticeable as vitiligo. I’ve had numerous people ask me why my hands are this way, or someone asked, “Do you have that thing that Michael Jackson had.” I’ve been asked if I was burned. It’s always embarrassing. The best thing someone can do is to just ignore it and not ask about or bring attention to it. It’s really only embarrassing if someone calls attention to it.
ReplyDeleteThe best in your treatment!!
ReplyDeleteWhen I was in the military I had a young African American medic that I worked with who had the same condition on her face, neck, hands, and maybe other areas that I did not know about. When she came to the floor/work she was flawless. She left her hands as they were. You thought she stepped out of a high fashion magazine. We never, in public, saw her without her make-up. One evening I wanted to use her popcorn maker that was outfitted to be used overseas-Germany. I ran up to her floor, knocked on her door, and I heard a voice, who is it came the command, I stated it was me, and she opened the door and greeted me. I was shocked by what I saw. I tried to play it cool. She had taken off her makeup for the day and was her authentic self. Her face looked like someone dropped acid on it and all the pigment of being African American was gone. She happily gave me the popcorn maker. From that point forward I knew what painstaking detail she went through to look like everybody else EVERY DAY. We discussed it. She said finding makeup to match her skin was hard. This was in the mid-80s. She said she used Fashion Fair-specialized in African American completions-and it worked well but it tended to be a little heavy. Beautiful lady, a beautiful soul.
This is wonderful news. I hope all goes well.
ReplyDeleteVRCooper, I tried makeup once, but I never could match my skin color, besides, it always looked like I had on makeup. A female friend of mine, who is a master with makeup (she always looks fantastic) was going to take me makeup shopping and show me the best way to apply it, but we never got around to doing it.
ReplyDeleteIt is most striking with dark skinned people. I’m not fair skinned, so it’s noticeable with me, but it’s not as dramatic as it can be with African Americans.
I do massage therapy, and recently had a new client who undressed completely, revealing vitiligo on and around his penis. My first thought was, "Oh, that's interesting." We didn't discuss it and he didn't seem uncomfortable; neither was I. People are beautiful and unique, and yet we all wish we looked like some ideal body.
ReplyDeleteAnyway, glad insurance is coming through for you. That's always such a struggle.
And once again, thank for sharing all you do.