ash_78 (ash_78) wrote in vitiligo,

my story

Hi evry1, I’ve jus joined and was reading thru all the stories - let me add my bit :).

I'm South African.  I am naturally of medium complexion as I am Indian. So my vitiligo it is clearly visible.
I found my first spot at around 22yrs - I think my mom mentioned a small dot on my back.  
It then really became evident with a small then expanding dot on my neck and corner of my eye/s and then as they say the rest is history...
In the first 1-4years I visited the best dermatologists and vitiligo specialists none of which I can honestly say sincerely offered the kind of support a person would need after such a sudden turn from a healthy, generally good skin to the helpless vitiligo.
Not only that but no question could be answered conclusively uptil now yet the treatments that cost a load where dished out.  There is still no cure.  They still don't know how it starts and why.  They also don't know whether the treatments they put u on will work.  
I did at more than one point with my vitiligo query the bleaching/de-pigmentation option however I was never given any conclusive response with facts - like whether it was within my grasp, whether the technology was available to our local dr's or whether it was sumthin only Michael Jackson could afford!
We just put our faith in dr's blindly.

The medication offered at the onset of the patches - at that time just a few patches - were mostly creams. I can't say they did anything tho as it still spread and after a year or so I initiated the PUVA treatment, on advise from my dermatologist (vitiligo rep for south africa) - which was the exposure to UV light within a special cubicle resembling a shower.  There was with no medication taken simultaneously and the amounts of second’s u were exposed to depend on the sensitivity of
ur skin.  This treatment had to be repeated 3 times a week in my case, maybe it would decrease with the need - very similar to a maintenance program for life.  It usually turned the patches red (like sunburn) and occasionally a spot or so of Melanin would surface.

However the melanin resurfacing was not consistent, some islands had melanin spots others didn’t;
Also my other concern was that the treatment did not in any way inhibit the vitiligo from spreading to other areas;
going for the treatment was inconvenient and expensive;
after the treatment the vitiligo islands were sensitive and sore like they would after sunburn - the exposure also made the surrounding skin a little darker than ur normal colour.

I stopped my treatment after a few months - I was still a young girl at that time.
I just lost hope cos with all of the above, if after a treatment I wanted to speak to my dermatologist to ask just one question he actually said he would charge me as a consult.  I didn't think that was professional. 
I did go to another dermatologist but I still felt the same attitude that they saw us as a form of steady income NOT people who they wanted or could really help.  One actually tried to do some psychoanalysis on me because I asked questions and didn’t want to commit to a treatment anymore.  
Why not just say there's nothing you can do about it. Like balding!

Looks were obviously a priority at that age, any age, even though I quickly learnt there is nothing I can do about it.  As one of the girls actually said - she loves hers - strangely enough I have had more than one person come up to me and say how nice i look - once a girl grabbed my hand and said what is this - and she thot it was so great and looked beautiful and that so long as it gets peoples attention - she wished she had it !!!!!!!!!!  
I obviously thot she was crazy!  But wouldn't I just love getting more of those reactions.
I think more ppl get curios, hopefully not to scared of it...

Still getting back to the way things used to be would be the ideal result! 
I have also tried finding info on depigmenting as my vitiligo has spread alot.
We hear about bleaching and depigmenting but I wonder is it actually an option for the average person.  
I actually found out about the skin lightening option from one of those institutions that do botox etc and they said they’d never attempted lightening skin of someone with vitiligo and that they do their lightening in stages and that it might leave you with an added shade.  It didn't seem to be an advisable for me.
People also talk about a tablet that you can take that would make it spread faster, does it exist?  
What is fact and what is fiction? Maybe you guys overseas know a bit more....

Anyway - that's my story.
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