Vitiligo

Guru’s progress, clinical trials, Crowdfunding Vitiligo research and Twitter

In a previous post I talked about my very good friend Guru. We first met at our consultation with Prof. Schallreuter in Germany, both attended the Dead Sea trip this year and remained in-touch since.

I met Guru in London recently and we caught up on each others repigmentation progress. Guru has had such success, he’s great example of how effective the treatment can be:

Guru before/after

Guru before/after

As with a number of people that use phototherapy treatment, he’s currently experiencing intense hyperpigmentation but usually this subsides and returns to normal after a few months. It still demonstrates just how much pigmentation can be regained.

I started looking more at what  research and clinical trials had been carried out surrounding Vitiligo and what’s planned for the future. A few that I find the most interesting are on my Useful Links page. I’m interested in Gingko Biloba and it’s anti-oxidisation effects but there is also a run down of about 60 other trials on ClinicalTrials.gov. It got me thinking…

It’s generally accepted that Vitiligo currently has no cure because the medical industry believe it doesn’t warrant mass funding because the condition isn’t life threatening, and affects only 1-4% of the worlds population. People can donate to certain Vitiligo organisations but this usually isn’t well advertised and people can’t necessarily see where their money is going. I started thinking about how a Crowdfunding platform could really add value here. Crowdfunding platform’s such as Kickstarter, Crowdcube, etc all allow people to invest money in a potential product or business idea.  I think applying this to Vitiligo research would be interesting, it would give people(assuming mainly those who have Vitiligo)the power to fund specific trials and tests and actually see the end result of that investment. Well, I googled, and it turns out there is a new start-up called MedStartr which allows you to do just that. When Vitiligo Support International hold their next global conference with patients, doctors and researchers, it might be worth considering!

Finally, I still can’t get the new post subscription function working as I want it to, so for the time being I’ve set up a Twitter account. If you use Twitter, you can subscribe to it for new posts.

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48 Comments

  • Reply Ken June 21, 2014 at 1:15 pm

    Simon,

    What is Guru using for light source?

    Thx again

    Ken

  • Reply George June 21, 2014 at 2:31 pm

    Great results! I am still wait for the professor to get back to me so I can book a trip to see her. No response yet unfortunately. 1 month and waiting. They must have quite a backlog of mails since returning from Jordan. May fire off another mail this week. Fingers crossed.

    Thanks for all your updates Simon. Really great blog with valuable information. Keep it up!

    • Reply Simon September 26, 2014 at 8:56 am

      Thanks George, good luck with your consultation.

      Simon.

  • Reply Rouba June 24, 2014 at 5:51 pm

    Hi Simon,

    Thank you for sharing your story and for the updates.

    You mentioned something about how green tea is bad for people with this condition. I thought it was a detox that’s good for anyone with vitiligo. Can you please clarify? Is there anything natural to your knowledge that can help? Do you know any website that publishes the latest research findings on vitiligo?

    Thank you and I look forward to your next post.

    • Reply Simon September 26, 2014 at 9:05 am

      Hi Rouba,

      Thanks for the comment.

      The doctor did seem to feel that the excessive intake of green tea was bad even though it is an anti-oxidant. Unfortunately, I can’t remember what her exact reasons were but I think it was from her experience of seeing a patient who was drinking 3 cups of green tea a day and she felt it made his vitiligo worse.

      I always take Ginkgo Biloba in an attempt to keep oxidisation at a normal level.

      Simon

  • Reply Flavio June 27, 2014 at 5:20 am

    Do you know what else Guru is following?

    Diet?
    Supplements?

    How is he dealing with the root cause?

    regards.

    • Reply Guru July 8, 2014 at 2:20 pm

      Things i did to get to the point where i am now:

      – Glutenfree
      – Probiotica (yakult)
      – Green juice (celery, green apple(granny smith), kale, spinach and ginger
      – Limited dairy intake
      – Follow strictly the treatment
      – Most important…have a lot of fun, dont stress 😉

      • Reply Flavio July 8, 2014 at 4:40 pm

        Thanks.

        Congratulation!

  • Reply Flavio June 27, 2014 at 5:24 am

    Also, do you know his UVB-NB exposure time?

    Regards.

    • Reply Simon June 29, 2014 at 8:34 am

      Flavio,

      I’ve asked Guru to comment on here to answer your questions, he will respond shortly.

      Simon.

    • Reply Guru July 8, 2014 at 2:16 pm

      Hallo Flavio,

      i am doing 28 seconds of uvb on each part of my body.

      • Reply Flavio July 8, 2014 at 4:37 pm

        Thanks Guru.

        How many times a week?

        • Reply Guru September 16, 2014 at 8:26 am

          It depends on my treatmentplan

  • Reply Flavio July 4, 2014 at 1:14 am

    Simon,

    How should exactly PC-KUS cream be applied?

    Just on the patches? In a circular move?

    Please let me know the Dr’s instruction.

    Regards.

  • Reply Flavio July 8, 2014 at 5:06 pm

    Guru,

    If you have time check the following site ( http://ibstreatmentcenter.com/ibs/testing-for-ibs-triggers/foods-included-in-allergy-testing and http://ibstreatmentcenter.com/b1.pdf ).

    It might improve even more your success.

    They are able to let you know the exact food (spices, vegetables, herbs, fruits, greens, etc) that you are intolerant of.

    Regards.

    • Reply Guru July 14, 2014 at 10:24 am

      thanks Flavio, i will maybe do a allergie test

  • Reply Pedro Gonzalez August 3, 2014 at 5:25 pm

    Hi Guru,

    I send you an email and I would like to know if you received it. I send it July 23.

    Thank you

  • Reply Bhaskar August 9, 2014 at 8:17 am

    Hi ,

    Looks like i am suffer ring from vitiligo, i see 3 white patches on genital area and couple of small dot like patches on both feet, i think condition is in its initial , can you please suggest treatment, i would like to do it myselft, if you dont mine , can you please explain steps in little details , drugs and instruments to be used.

    Thanks, Bhaskar

    • Reply Flavio August 11, 2014 at 3:39 pm

      Bhaskar, please see a doctor ASAP.

      My best treatment guess would be the following general steps:

      #0- Start following a gluten-free and dairy-free diet for 3 months (at least)
      #1- Take a good anti-oxidant supplement (with NAC, ALA, Vit E, L-Methionine)
      #2- Take a good probiotics (by metagenics) and Fish oil
      #3- Take B-Complex (B12 and Folate) , and minerals (zinc, copper and selenium)
      #4 -Topically, apply Protopic (for face) and Elidel (other parts) cream once a day before bed
      #5- Apply pseudocatalase cream twice a day (before 9AM and after 4PM)
      #6- Take a 10min sun bath (2x a day 20 minutes after applying pseudocatalase) #7- Follow short term UVB-NB home phototherapy (3x a week right before #4))

  • Reply Flavio August 15, 2014 at 3:27 pm

    Recently a friend of mine let me know about a new vitiligo cure research. When I started reading about it, I realized that the Doctor’s theory answers most of the doubts, if not all of them.
    Before checking it out, be prepared to break paradigms, since he states that the main cause of non-segmental vitiligo is not the immune system, but friction (physical stress).
    My son is 13 years old and he has vitiligo since 9. I have taken him to most of the medical specialties in order to find all the vitiligo puzzle pieces, but it seems that I’m not going to get anywhere.
    Read in english: http://www.researchforvitiligo.com
    Read in italian: http://www.studiomedicobordignon.it/index.php?option=com_content&view=article&id=370&Itemid=243
    I also had a chance to speak with Doctor Matteo Bondignon (researcher) and I would like to share with you, but check out links above first…

    My question:
    “We all know that vitiligo is a symptom of something wrong from inside. I’ve been working hard to find the right diet and supplementation for my son. I’ve been also taking him to an UVB-NB phototherapy treatment. We did all the allergy tests, we treated dysbiosis, we checked thyroid and emotional stress. I reduced the oxidative streess as much as I could.
    But since my son loves soccer and guitar, his hands and feet have most of his vitiligo, which has been spreading. It seems to be caused by the friction (physical stress).
    Instead of removing MIA, what can we do to make the melanocyte adhesion stronger?
    What should I supplement my son to give melanocyte better resistence against MIA?
    I think that would be the right solution, since it would focus the cause, not the effect.

    His answer:
    “As for my studies, there is not currently any linkage from something inside us and the development of vitiligo.
    Everything start from the MIA protein and as you say friction is one of the most causative element.
    It is not possible to make the adhesion molecoles stronger because this strongness is genetically provided. That ‘s why the only way to cure definitively vitiligo is to eliminate or anyway to rend inoffensive the MIA protein.
    We are working hard on this and I hope that soon your son can get his skin of one color.
    Thanks for your support and please help us to share the knowledge about the MIA protein and the new hope for all the patients suffering from vitiligo.”

  • Reply Guru September 16, 2014 at 8:26 am

    We are close!!!

    http://news.medill.northwestern.edu/chicago/news.aspx?id=217259

    • Reply Pedro Gonzalez September 23, 2014 at 9:08 am

      I talk about the research 3 months ago.

      • Reply Flavio September 23, 2014 at 1:08 pm

        This research is taking the wrong path. Please check the other one ( http://www.researchforvitiligo.com ).

        Despite both talk about a protein, they go to opposite direction.

        Le Poole’s research still correlates vitiligo with immune system and Dr. Bordignon has disassociated them completely.

        Also check http://www.vitiligomap.com

  • Reply Reena September 27, 2014 at 3:31 pm

    Hi Simon/ Guru

    We just started treatment with the Prof. We really liked their attitude ,experience and expertise.It has been a month now, we do see some changes . My son’s vitiligo is limited mostly facial and your blog really inspired us to go to Prof. My question is how long did it take for Guru to have his response ?

    • Reply Flavio September 27, 2014 at 7:45 pm

      Reena,

      Is your son doing UVB-NB phototherapy?

      If so, what’s his equipment?

      Regards.

      • Reply Reena September 28, 2014 at 4:48 pm

        Yes – dermalight 80.

        • Reply Flavio September 29, 2014 at 1:43 am

          In my opinion, Guru’s incredible results happened because he was under a powerful oxidative stress without any UVB-NB treatment. When he addressed all together (taking anti-oxidants, UVB-NB session, pseudocatalase cream and gluten-free diet) the result achieved an amazing sinnergy.
          Another factor that probably played an important role in his treatment was his treatment discipline. Congrats Guru!

    • Reply Simon September 29, 2014 at 12:28 pm

      Hi Reena,

      As I understand it, that photo was taken just over a month after returning from Jordan. I’m about to do a blog post with the latest photo on Guru’s progress.

      Simon.

      • Reply Reena September 30, 2014 at 3:49 am

        Great , thanks Simon. Do he do the home regimen before going to Jordan and if yes did it help ?

        Reena

        • Reply Simon September 30, 2014 at 6:15 pm

          Hi Reena,

          Yes, I think it was a month or two before Jordan he started. When I met him in Jordan he had a few small freckles of repgimentation on his arms.

          Simon.

          • Reena October 1, 2014 at 5:09 am

            Thanks Simon. So the incredible results on his face are from Jordan then?

            I really appreciate your prompt replies and your blog.

            Reena

          • Simon October 6, 2014 at 2:51 pm

            Hi Reena,

            Yes that huge boost is most definitely from the Jordan climate and Dead Sea.

            Simon.

  • Reply Pedro Gonzalez September 27, 2014 at 11:57 pm

    The Research got approved first level by the FDA and is almost finish with the second level.

    • Reply Flavio September 29, 2014 at 1:36 am

      I really expect they come up with a good cure (immunization, or cream or pill).
      But I honestly don’t believe their path anymore. They insist with autoimmune theory, what has been overcome by Dr. Bordignon’s theory. His theory explains what no one did.

      Anyway, it’s good to know that there are more then one vitiligo researches going on.

      I hope the cure comes soon.

      Regards,
      Flavio Coragem

      PS:There is also the afamelanotide clinical trial currently happening in Singapore

      • Reply Christine May 28, 2015 at 5:40 pm

        Hi Flavio,

        As for the Clunivel trial, yes it is happening in Singapore and my husband is doing it right now. So far, we have seen some progress and we are hopeful about it.
        Has anyone been to the dead sea trip for 2015?

        • Reply Flavio June 8, 2015 at 6:54 pm

          Great!
          Please keep me posted.
          fcoragem at gmail.com

  • Reply Pedro Gonzalez October 4, 2014 at 4:11 pm

    Dr. Le Pooles goes to the DNA key in finding the solution and proves it with pictures. The DNA on mice is %99.99 the same as human.

  • Reply Flavio October 6, 2014 at 4:15 am

    I hope she finds the cure. But I believe Dr. Matteo is closer.
    The reason is: while Dr. Le Poole tries to associate a protein with the immune system action, Dr. Matteo has identified that a protein (similar) is the MIA itself. In his thesis, MIA is the one the detaches melanocytes and causes white patches. Eliminating MIA, melanocytes will be back. His cure is based on a cream that neutralizes MIA.

    • Reply Olga October 6, 2014 at 7:59 pm

      Flavio, did Dr. Matteo mentioned when the treatment will be available? Meantime he just promise people on his facebook page that it would defenetly work..

      • Reply Flavio October 7, 2014 at 9:42 pm

        He doesn’t like to mention that in order to not frustrate people. My guess is that will be early next year (trials) but he never confirmed that. In the meantime, I’m searching for any cure…

  • Reply Pedro Gonzalez October 8, 2014 at 3:56 pm

    How long does it take to blog pictures??????

    • Reply Simon October 9, 2014 at 2:17 pm

      When I’m ready to.

      Simon.

  • Reply Gav October 12, 2014 at 11:29 pm

    Simon,

    Thanks for the blog – very informative! I was trying to contact you about the experience you had in Fulham as I’m about to see an Excimer laser specialist in London also. Can you get in touch with me?

    Cheers,

    Gav

    • Reply Simon October 18, 2014 at 9:03 am

      Hi Gav,

      Sure!

      Where in London are you getting it done? Is it at London Laser Clinics?

      Regards

      Simon.

  • Reply Jay January 23, 2015 at 9:20 pm

    Flavio, very curious how your son has evolved. I am in a similar situation with my daughter.

    Best,

    Jay

  • Reply Safia May 27, 2017 at 10:19 pm

    This blog is such a relief to find.Its not full of statistics or scientific jargon but real people and their experiences.My mum got Vitiligo at the age of 64 and it has been very hard for her to cope at times.I have found it hard to see her change right before me as she is brown and the white patches really contrast with her skin.It keeps moving to new places at times it slows down and we think something’s working and then we think perhaps not and stop whatever we try and then Bam a new area becomes affected.I do believe the physical and emotional stress has contributed immensely as my mum has a physical disability which affects one of her legs (sever limp) and it came about after an emotionally difficult year and two years after a leg injury.But now she has begun to accept her destiny and not get depressed thank God.I am more hopeful the more I find out about proactive people like you Simon and your commenters who all seem to have the key to pushing research forward,hope!

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