--
Late last week, Clinuvel attended the first ever Vitiligo World Congress (VWC) in Milan, Italy, to learn more about current issues in treating vitiligo. The VWC is an ambitious project, designed to address both physicians’ and patients’ requests for new therapies and to enhance understanding of the disease. The medical conference is the first of its kind, with one of the three days being entirely devoted to patients.
Several major issues struck our attendees and may have ramifications for our ongoing work in the field of vitiligo.
Firstly, there is now consensus among most leading experts that vitiligo is an auto-immune disease which lies dormant until an environmental trigger causes onset. For many readers, this will not come as a surprise, however it was the conviction with which these themes were presented and discussed that showed greatest progress.
Of particular interest was the vitiligo GWAS study; a global effort to identify possible genetic variations which contribute to vitiligo. Unfortunately, there is a vast area of disease knowledge which still remains uncertain. For example, while it is clear that there is genetic predisposition to the disease, the genetic variations identified in the GWAS study only account for approximately 11 percent of vitiligo cases.
In terms of treatment efficacies, the rate of repigmentation with selected therapies is often encouraging, but long term follow up has shown that treatment effects are frequently short lived and depigmentation eventually reoccurs.
Mental health and quality of life were two main themes central to the conference. Both physicians and those with vitiligo spoke with conviction about the devastating impact vitiligo can have, not only on those directly affected, but also on their families and friends. This was perhaps best surmised by Don Verze (founder of the San Raffaele Hospital hosting the conference), saying that vitiligo was a ‘psychological catastrophe’.
Finally, a number of speakers presented on the challenges faced in the study of vitiligo, particularly how best to design a trial for a therapy or treatment which will produce a clear outcome. Given the many unknowns in vitiligo – causality, onset, spread of disease – it was emphasised that trials must be able to maintain high standards if they are to have a genuine contribution to the effort of tackling the complex disease that is vitiligo.
Further reading:
- The 2010 Vitiligo World Congress program
- More on Clinuvel’s program for vitiligo can be found at http://www.clinuvel.com/vitiligo.
- An introduction to GWAS can be found here. More can be found on recent progress with the GWAS study in China in this recently published paper.
- Results from another vitiligo study, looking at research priorities, were presented at the conference and will be published online here, shortly.
Replies
Yes I have followed the three days conference it could have been very interesting if Clinuvel inroduce there tecnology where the leading top scientists and Clinicians of vitiligo were participated in .
Since I m not a medical person , I was afraid not to understand what they going to talk about on the scientists days, but thanks to varios vitiligo forums mainly VSI we have learned a lot, I have understood mainly , most of the topics and issues are discussed here before. The only different is it feels so good when you hear the updating from the right people with some evidence and data but most remains still just as theory .
When ever I see “before and after photos” on the internet it remands me only Photoshop trick, but now when I saw doctors and researchers show on the presentation before and after photos watching us the progress and the surgical evidences in front of other leading scientists, it really gave me a confidence that there is some thing we can do.
Dr.R.Spritz had a wonderful presentation on recent advances in genetics of vitiligo ,he explained it in a very easy way . he mentioned that there is a huge amount of fund and research on the other autoimmune disease which have some common similar genes with vitiligo. If the other autoimmune diseases find the gene then we are automatically inn , it will make it easier to find the main cause. Dr. Sprits took his time to thank Vitiligo Support International, for cooperating and playing a key role in the study by helping to recruit participants. Finnaly He says “ we have got the street we are looking for the addresses”
Another researcher who comes clause to find the underlying cause is Dr. Atsushi T. from Japan;- his presentation was heavy to understand for me it was on the scientists day explanation was only medical and biological symbols combinations , generally it was about possible link between Keratinocyte expression of p SAT3 ,it is about infiltration of TH17 cells in to vitiligo skin, according to others who explain to me this research is important to understand what made the antibody cells attack melanocytes. and it show that there is big hope that they have seen a light on the tunnel.
I was disappointed that Prof. k. Schallreuter didn`t come ,she was supposed to present on scientists day ,I wanted to listen her theory and treatment in front of other leading researchers. I had a plan to take her treatment but after the conference I drop it coz I lost confidence on her treatment..
Other interesting presentation was about environmental factors which can be trigger to general vitiligo, dr. R. E. Boissy from US show us photo how some industry chemicals can depigment the skin in the laboratory test .he explaind industrial or commercial phenolic compounds can first develop occupational vitiligo then it can activate the general vitiligo in the body. some of the vitiligo trigger chemicals which we can find in a daily supermarket product like deodorants, household removers,sops, hairdye,. vitiligo trigger chemicals phenols : Catechol dervatives, sulphydris: Hydroquinone I have noted only few, I thought the presentation will be on website or we get it on cd but it didn`t happen the handbook we got has no all information ,
Please admin can you contact dr. Boissy and ask him if these chemicals are out of cosmetic products, he metioned that some of this bad phenols are not in use. If it is in use which are the most usual phnols in cosmetic products which we uses dayly.
About Phenoxyethanol which there were discussion about it on varius forum. He didn`t mentioned it .is it safe ? may be scientists has found out that it is not bad any more . . The information was not clear for me I didn`t get a chance to ask him. Please can admin clear it out .
One of the best treatment I have observed is Cell transplantation which is presented by Thomas Hunzikeris from university of Burn in Switzerland It was very interesting :- it shows how melanocytes which present in the scalp hair follicles can be used to treat depigmented skin. This latest techniques is already in use, its commercial equipment was advert for other dermatologists out side. What makes this treatment unique is while all the other cell therapies and skin grafting treatments require stable vitiligo , according to the dermatologist adverting the technology he said that this treatment helps even for active non segmental vitligo too. They have experienced that when they implant the cell for example on the right cheek the pigmentation has achieved on the left cheek too, it was really impressive. I could have tried this treatment but I have decided first to stop and arrest the further depigmentation with protopic and NB UVB.
By the way there were many tables outside adverting variety of products and cover cosmetics..
Most topics ware based on research , treatment :- the common issues on the presentasions were tings which we heard about before . it is about free radicals, oxidative stress. Inflammation ,roll of antioxidants. On the treatment base were Ultraviolets and photothrapy immunomodulator ointments and steroids
I will just make some notes on facts and thories though most of notes are which we know already.
- Vitiligo is an autoimmune disease, in which the body attacks itself. By Dr. spritz
- Some genes that showed up in a people with vitiligo were associated with other autoimmune disorders such as Type I diabetes ,lupus ,Hashimoto's thyroiditis. I took only those I remember.
- Children from vitiligo parents they have 6-7 % of chances of possiblity to inherited vitiligo genes combination. It doesn`t necessarily mean that they will develop vitiligo in there life .
- Most techniques like adult stem cell therapy, cellular grafting, micropigmentation works for stable segmental vitiligo.
- NB UVB and Tacrolimus (Protopic) are mostly helpful for nonsegmental vitiligo, There is a scientific evidence on use of Tacrolimus ointment (Protopic) and NB UVB treatment. It is SAFE SAFE SAFE even for children’s as long as it is monitored by dermatologist.
- Steroids halp to stop arrest the further depigmentation .
- One of the clinicians has shown use of ginkgo biloba has helped some of his patients.
- One of the Italian researchers has shown also early age smokers are more exposed to vitiligo ,
- There is no any scientific evidence about which diet is good or bad for vitiligo, but one of the scientist Dr. Smida Rached mentioned that it is good to consume foods that contain omega 3 and 9 and avoid oils that contain omega 6 and he was explaining about good and bad cholesterols If I am not mistaken I think he had a medical trial on this theory . Generally variety and healthy, balanced diet and life style is good. He has developed orally taken oil which can help vitiligo he is working to get approved in Tunisia.
- The vitamin C usage is still unclear for me, one of elderly Indian doctor who has expriance with over 18000 patents claim taking lime juce affect the medication progress of his patents. Other say vitamin C is an excellent antioxdant , it is good if VSI give us comment about vitamin C.
- Some doctors has discovered that a lack of vitamin D 3 is common deficiency in vitiligo patents, I followed this because I have lack of vitamin D3
- moderate sun exposure is important to stimulate pigment cells.too much is not good as sun has all the rays that can damage our skin.
- Less stress is important specially when we take treatments it is very important to control stress. I think when we stress our adrenalin gets high and it affect the antibodies they get intoxicated and start to attack our melanocytes . there must be a connection between psychological stress and antibodies.
I am so happy and proud that I attend the conference specially meeting and ask to the known scientists really give me a confidence to continue with my treatments. It was a very useful and interesting congress, listening to all this experts theory and fact from almost all the continents most from Europe.
I really recommend to all vitis friends to attend when ever there is conference about vitiligo near you .
Most of all , watching how eager the researchers are gave me a real hope that soon they will have understanding what causes vitiligo.
I am not english speaker ,I hope you all understand my English , Thanks for reading!
Bamsegutt
In terms of our technology, because we don't have any clinical data for vitiligo, it's a little premature to be presenting at such events, however Prof Boehm did discuss the POMC system in some detail and mention the potential of alpha-MSH analogues (afamelanotide, the active pharmaceutical ingredient in our drug product is an alpha-MSH analogue) as repigmentation therapies in vitiligo. Dr Picardo also mentioned our trial briefly during his presentation on the patient day.
You said it was a little difficult to follow all of the presentations; was there something in particular of which you were unsure? I'm happy to ask questions of our scientific team and point you in the direction of some further reading if it's of interest.
Thanks for your interest to share my thought with others ,I will send you my e-mail on PM and you can ask me any ting you want I am one of the vities who try hard to find a solution and follows all news about vitiligo.
I must have missed it, I haven`t heard when Piccardo mention about SCENESSE or Clinuvel , but I have heard about alpha-melanocyte-stimulating hormone (MSH ) I think On the scientists day.
What I said difficult is, It was too much information every 15 minuts …the last day my head was information overloaded .There are some things still unclear for me for example about vitamin C some say it is good to reduce as it maks the antibody active other say they have clinical data which shows people with vitiligo are deficient in vitamin C and adding C tends to help stabalize vitiligo that is spreading.
Please tell us if you know anything about vitamin C
By the way we are very happy that your treatment helps non segmental while most other extreme cell treatments help stable and non segmental vitiligo.
Does Scensses work for people who have active vitiligo too?
Bamsegutt
thaks a lot bamsegutt
most of what said , i have red it before
To summarize a congress like this is not easy, thnk u for the effort and i hope that one day we will get solution.
Vit c ,ive red about it and i ll post something.
in 2000 i had lupus ,6 years later i dvlped vitiligo, its realy an immune problem , we should also be carefull with ourt diet so that we can avoid diabetis and other immunes desease
fred
I've had a little feedback on the vitamin C front. I want to preface this, however, with the comment that I'm not a physician, nor am I providing medical advice. As with any treatment regime, you should discuss this with your treating physician/dermatologist.
Like so many things about vitiligo, there is some disagreement in the medical literature as to the value of vitamins alongside a treatment regime, although anecdotally they appear to be something which are widely used. In terms of vitamin C specifically, we came across two studies which used vitamin C (along with other supplements) as adjunctive therapies.
The first, published in 2006 (abstract here), uses vitamins (C, B12 and folic acid) with broadband UVB, citing previous studies with vitamin B12 and folic acid as justification for pursuing vitamin treatment. The study is very much inconclusive as to the value of these supplements.
The second study, published in 2007 (abstract here), suggests that antioxidants "significantly improves the clinical effectiveness of NB-UVB, reducing vitiligo-associated oxidative stress". Again, vitamin C was used alongside other supplements, so its exact effects in isolation are impossible to gauge.
Sadly neither study provides a conclusive answer specifically for vitamin C. I would be keen to see further studies if you're aware of them and welcome any comments on the above.
Now it is Oktober we are waiting disparately for the news if Sensses works on all non segmental vitiligo or not . we hope to hear from you the progress.
One more question I have asked before , are you going to try it on people who have active vitiligo too. It is very important because most treatments require stable vitiligo . If it can stop the active vitiligo and give repigmentation for all I will defiantly buy your stock share.
We are really waiting for next announcement.
Bamsegutt
Thanks for your response and your email.
I agree that the 15 minute speaker spots were, at times, a little hectic, but it did allow for a great scope of content to be presented.
I've forwarded your vitamin C question to our scientific team; as this is not an area in which we're working directly, I'm not sure of the response I'll get, but I'm curious to know this too. I'll keep you posted.
In terms of SCENESSE (afamelanotide), we don't yet have any proof that the product is effective in any form of vitiligo. The scientific rationale supports the use of the drug in nonsegmental vitiligo, but until we have clinical evidence, it is too early to say that the treatment 'works' (it's actually illegal for me to suggest that it does have an effect in certain disease/disorders in many counties, so I need to be careful of what I say online too). Until we have clinical proof of safety and efficacy in clinical trials, there is no evidence of how the drug will 'work', but this is exactly why we're running trials: to try and detemine if it can safely assist in repigmenting lesions in nonsegmental vitiligo.
Does this help? I appreciate it's not a direct answer.
At present there is no evidence that the product will assist in either form of vitiligo, rather a scientific basis for investigation. NSV is the focus at present, I can't really say much more until we have some results.
Hana
-
1
-
2
of 2 Next