The previous post about the Scenesse treatment has sparked a lot of interest and many questions about the process. I was contacted by phone this week by a Director from Clinuvel. We had a wonderful conversation; most impressive was his passion for helping people and his empathy for people with vitiligo. Here is a video they sent to me to share with you.
[flv:https://vitiligocover.com/wp-content/themes/arthemia/images/Clinuvel_Vitiligo.flv 480 360]
definition: empathy (n).
1. Direct identification with, understanding of, and vicarious experience of another person’s situation, feelings, and motives.
hi nathalie,
seems its only suitable for area where hair folicle is.. is it suitable for lip tip vitiligo? hope u will ask this to clinuvel btw i have lip tip vitiligo
Hello,
First off, I am not a doctor, but I have over a decade worth of experience of segmented vitiligo.
Cartman, to answer your question depends on the type of “cure” you are looking for.
This specific product is meant to target reservoirs in hair follicles, but my segmented vitiligo has caused grey hair in the areas as well..
This does not allow for the catalyst stimulant for re-pigmentation.
Since vitiligo is so vastly spread among all diversities combined with all sorts of diets resulting in a immunological response, there has to be a common baseline.
If you define “treat ability” to correcting the root immunological imbalance response; segmented vs non-segmental does not differ. They are the same immunological response to a unified deficiency.
ok i thought u forgot thnx 4 ur reply i m also searching for it and i found a book the pigmentary system on google books but i dont understand half of what it sayin its a medical book but i will read it anyway if i find something useful i wl post it here.
Kind regards
Hi Cartman,
When I don’t answer right away it’s because I don’t know the answer and I’m researching for you on the internet.
You want to know if segmental is harder to cure and you would like links to which cures have helped the diff. vitiligo’s, right?
I’m looking in to it but have you also searched the internet? if you find the answer faster than me, write it here :)
Please Nathalie respond i have been desperately waiting for ur response and i do have another question to ask it is quite important to me have u in your experience heard anybody geting repigmentation on the spots which have white hairs (due to the vitiligo).
Hi Nathalie,
Does that mean segmental vitiligo is difficult to treat than generalized one? and can u do me a favor and provide me with any info on effectiveness of different treatments according to the type of vitiligo i tried bt cudnt find it myself thnx.
Hi Cartman,
I emailed Clinuvel last night, and they were kind enough to reply by this morning!
Hi Nathalie,
A fair question and one I sent across to a member of our scientific team who reviewed the initial video. I’ve had the following response:
Phototherapy with NB-UVB is currently the preferred treatment for patients with nonsegmental (generalized) vitiligo. In nonsegmental vitiligo patients, where multiple or large area of the body are usually affected, NB-UVB is currently the first line treatment for inducing repigmentation and can also be used to arrest disease progression in active vitiligo.
Phototherapy is also indicated in segmental vitiligo, but the response of segmental vitiligo to NB-UVB therapy is at best limited.
In patients with segmental vitiligo, the use of targeted phototherapy with excimer laser or monochromatic excimer lamp, both at 308 nm, is often preferred. The red light emitted with helium–neon laser phototherapy has also been described as a potential therapy to promote skin repigmentation in patients with segmental vitiligo.
Alternatives other than phototherapy may also be efficiently used for patients with segmental vitiligo, such as topical treatment (corticosteroid creams). Surgical modalities such as certain types of grafts (autologous skin grafting) have also be described as effective to manage segmental vitiligo.
I hope this helps.
Kind regards
Hi Nathalie
Thnx 4 ur response the thing is i m nt dat woried abt the apearance i just dnt want it to spread further which wil make me feel like i m nt doin enuf to control it well i will definitely take ur advice nd try to stay focused on my studies thnx agian and stay in tuch.
stupid research useless GET OFF
Hiya Cartman,
It’s a good idea to stay focused on your studies, after all, that is where your future lies. So what can be done to help keep you focused starting today?
Have you tried a foundation makeup. I know it’s traditionally used by women, but what the hell. If it works, it works. No one has to know that you’re using it and it is a quick way to get the white patches to blend with your pigmented skin. best of all, you can buy it today, experiment with it tonight, and feel better tomorrow.
Second, be sure to exercise. The chemicals that are naturally released from the brain help us mentally and physically. While exercising, your mind will stop thinking about vitiligo and after wards you will be more relaxed.
If you don’t have a lot of confidence in your doctors, perhaps you should read more about the different types of vitiligo to be sure that you indeed have segmental vitiligo. i did a post about this here
also, thank you for the compliment, it is such a pleasure to hear!
nathalie
Hi first of all thnx for rapid response i love this website i learned alot from here also i love ur enthusiasm in finding info and cure regarding this disease i developed segmental vit on my face a year ago it was successfully treated with cortisone cream but after few months it stirked back it even turned my hair white rite now i m treating it with tacrolimus and puva since two months but very very slow response to one or two spots or i dn’t know i m confused i will give it 4 to 5 months more to judge it. well the problem is i live in pakistan and dermatologists here are not up to date and dat expert in this field some even dnt know the difference b/t segmental and nonsegmental vitiligo all they did was prescribed me steroids they are very common and cheap in our country wel i wana find a satisfactory cure of this disease so dat i cud focus on my studies i m very much depresed rite now and geting wiered thoughts pls reply to me if find an answer to my above asked question and thnx 4 ur support.
Hi Cartman,
Great question. I will forward your question to clinuvel so they can give us an answer.
all the best,
nathalie
W8 does it mean its only for generalized vitiligo y not for segmental oh man this is disappointing…
That’s Amazing!