For most of my life I have been a marble cake. Personally, I love marble cake. it's beautiful to look at and very tasty but I always knew I hadn't started out as a marble cake and that made me uncomfortable!
Then, about 3 years ago I started to turn into a fruit cake (OK - I admit it - I've always been a bit of a fruit cake!.
And now I am a cinnamon cake - my original recipe - all one yummy colour - the way I used to be before #vitiligo!
Most doctors will tell you that loss of colour is the only noticeable #vitiligo-symptom. However, I always noticed that the skin on my vitiligo lesions was much more prone to natural exfoliation than the rest of my skin. If I rubbed the de-pigmented skin firmly with my hand every week or so dead skin would just slough off quite easily. I assume that this means that the skin cells in the de-pigmented areas go through their renewal cycle faster than normal skin. But this phenomenon is rarely, if ever, reported in any of the medical literature.
This sounds so bizarre that I used to wonder if it was really the case or if it might be my imagination (although I knew it wasn't). But when I finally re-pigmented a few years ago I noticed the same thing, only in reverse. The previously white areas of skin gradually became less prone to this natural exfoliation in direct proportion to the amount of pigment they regained. And once they had returned to their normal colour they behaved in exactly the same way as the surrounding skin.
I would be fascinated to know if any other vitiligo sufferers have noticed this same skin cell behaviour... or was it just me?!
Vitiligo seems like such a mysterious and unexpected disorder when it first starts to develop that that most sufferers, understandably, wonder where on earth it came from and why it chose to strike them (at least I did!). One of the first things you are told, of course, is that it is not infectious or contagious - you can't catch it. So an obvious question to ask is "is vitiligo hereditary?" A lot of parents worry about whether they will pass it on to their children. But, in reality, the likelihood of this happening is not especially high. It is estimated that only about one fifth of people with vitiligo know of anyone else in their family who also has it. No one in my entire extended family (through 3 generations) has had it. I am certain - from my own experience of developing widespread vitiligo and then recovering from it decades later - that mine was caused by digestive problems so heredity does not seem to have played a part at all. But who knows how many different root causes there may be for this mystifying condition?
I just read a very interesting piece of research on how vitiligo sufferers feel about themselves and how they feel their appearance is perceived by others.
Unjustified though this clearly is, it seems that a lot of people with vitiligo feel stigmatised and this is one of the reasons why depression and anxiety levels in vitiligo sufferers is significantly higher than in the general population. It is also one reason why so many go to great lengths to hide their white patches from others. (I used to guard my vitiligo from everyone like a guilty secret. Interestingly, it is only now that I have regained virtually all of my pigment that I feel able to talk about it with others.)
Not surprisingly, older sufferers tend to be less depressed and anxious than younger ones, no doubt reflecting the fact that the older we become, the less concerned we tend to be about what others think of us and, of course, the less likely we are to be looking for a life-partner.
If you like reading this sort of research, this is one of the more accessible pieces (not too full of medical terms or jargon!)
The two quotes below, which are cited in the report, show how varied the attitudes of vitiligo sufferers can be towards their condition:
“I feel that without vitiligo I would be a different person, my personality is trapped
behind a wall of being very self-conscious about myself. My only wish is to be cured -
to be normal”
“I can now say that it [vitiligo] doesn't affect my life at all, because I won't let my vitiligo
make me unhappy and neither will my family and friends let it.”
My name is Caroline.