When you have vitiligo, a skin disorder that has no cure, it is very easy to feel overlooked- even ignored- by the medical and pharmaceutical world. Sure, a cure seems a long way off, but that doesn’t mean that people aren’t out there working tirelessly to find a viable treatment and/or cure.
Rest assured that all around the world there are doctors, scientists, and everyday people who do care about us.
Thank you to Clinuvel for putting together this new video about vitiligo.
Tanning beds have 99% UVA treatment…..at least some do. Have u tried that? Does anyone have comments about tanning beds/salons?
Hi Mary , I too have had vitiligo for many years and never on my hands until last year and this year noticed it on both my hands. At first I really struggled to cope with it and I’m sure I was driving my husband crazy never wanting to even leave the house. I read up about UVB treatment and got my self a UVB wand. I use this at home about 3 times a week along with an ointment which I read up on called bakuchi and I’m pleased to say so far so good. Only been using it for 5 weeks now and there’s freckling happening, only slightly but deffenetly happening. So hopefully it will work for you. In the day I put some bronzing instant gel on the patches on my hands and you can’t even see them, but like everyone is just trying to get by until a cure is found. Good luck with your UVB treatment x
Hi Mary , I too have had vitiligo for many years and never on my hands until last year and this year noticed it on both my hands. At first I really struggled to cope with it and I’m sure I was driving my husband crazy never wanting to even leave the house. I read up about UVB treatment and got my self a UVB wand. I use this at home about 3 times a week along with an ointment which I read up on called bakuchi and I’m pleased to say so far so good. Only been using it for 5 weeks now and there’s freckling happening, only slightly but deffenetly happening. So hopefully it will work for you. In the day I put some bronzing instant gel on the patches on my hands and you can’t even see them, but like everyone is just trying to get by until a cure is found. Good luck with your UVB treatment x
I have a Vitiligo and have been treating with UVA ligh since October 2008. My body responded very well, I am cured ~90% on the face and ~60% on the rest of my body. Up until November 2010 my insurance covered this expensive treatment, but they stopped now. I have to decide what’s next. Hanna
I really liked this video. It gives me some hope. I can’t find a doctor who will do anything for my vitiligo. They all say that nothing can be done, just try to cover it. I tell them about all the info that I have found and I get dismissed.
My hands are almost all white with vitiligo now, I have lots of sections on my feet also; but the most worrisome part to me is that I now have it (a lot) in intimate spots between my legs and it makes intercourse
a little painful. I find this so embarrassing. I wish I new what to do.
Does anyone else have it there?
Where do you suggest I go if dermatologists won’t to anything?
I’m doing well.
My Vitiligo is still spreading, slowly now.
I have non-segmental and my doctor said that this type of Vitiligo spreads quite quickly in the first 2-3 years. Mine was the same.
She said that in most cases it slows down after that and mine has done the same as well.
I have never had it on my hands and now it has started on my right hand.
How did you cope with this Natalie? I am a software trainer and I’m worried that someone will notice.
I know that I just have to be strong and positive.
I’m starting my UVB in May and I hope that I will be in the group that re pigments.
I just want to buy time until there is a cure, and I also feel very strongly that we are closer than ever before.
Natalie,
Do you know if the clinical trials have started?
Did any of you signed up?
V
I love these types of videos I feel that hope and healing is soon ..
It feels so good, that this company has put out this research and Video.
Finally, some good information for the world about Vitiligo.
There were things in this Video that I didn’t know as a person who has Vitiligo.
I really believe that the world will have a cure sooner than later.
Natalie, what do you think?
Do you feel that it is just information overload, that the internet is being used more and more as a vehicle to inform or do you feel that in the last 3 years, there has been more advancement in the research and goal to find a cure?
I definitely find the latter.
Hi Mary
I think a a cure is imminent; many cancers that are cured today were incurable a mere 20 years ago. The internet can give a sense of information overload, but not all of the information doled out is trustworthy; so, when a company who is working on a treatment for vitiligo also spends time and money making informative videos, that serve no purpose other than educating, i feel a sense of community and a greater sense of hope in finding a cure because it shows that people and companies do care about vitiligo.
how are you doing mary? hope all is very well with you!
all the very best,
nathalie