I think it’s important that experiences are shared when it comes to Vitiligo clinics and treatments. A lot of new and advanced treatments are not available on the National Health Service in the UK and that means you have to go down the likely more expensive route of private medical care.
I started reading about Excimer 308nm Narrowband UVB laser treatments and it’s high success rate in America, it forces a high intensity beam of UV light at only the affected areas of Vitiligo. It claims to be much safer than other UV treatments and and has less risk of skin cancer(which is why I never attempted UV treatments before). Trying to find somewhere in the UK that could provide this treatment was a nightmare! Only a handful of places offered the treatment and nearly all only provided treatment for Psoriasis(which the Excimer 308nm laser is also used to treat) rather than Vitiligo.
I finally found London Laser Clinics in Fulham, London, who had this to say about their Vitiligo treatment. I was initially told via e-mail that it would cost approximately £70 a session and would take 15mins. They advised I book in for a free consultation.
I travelled to London(about 1hr 10mins from Southampton) and took the tube to Fulham. Their premises is very hard to find and a far cry from the Harley Street type place I was expecting. It looked like a dirty ex-office block above some shops on Fulham Road. I was greeted by an Indian Woman at the reception desk who took my details and asked me to go through and wait in the consultation room(just a room with an office desk) then she followed me in… Turned out she was both receptionist and “Doctor!”. Although I was far from impressed at this point, I still kept an open mind. The first 10 minutes of the consultation seemed fine, I explained my background and showed my affected areas on face and knees. She explained her credentials(although I never saw proof) and it all seemed in order. Then the consultation went very very weird.. I waited for a few months after the consultation and decided to send a complaint e-mail to the clinic and I’ll let that explain:
“Hello,
I’d like to discuss the recent consultation I had with London Laser regarding treatment of my Vitiligo with the Excimer Laser.
When I attending the clinic I was met with a very nice woman whom I first thought was the secretary but it actually turned out she was the medical professional doing the consultation, she also mentioned that she had previously worked at the Southampton hospital near where I lived.We discussed the extent of my Vitiligo and I pointed out that the areas I potentially wanted treatment just on some areas of my face but I also mentioned that my knees were also affected.
The following prices were discussed as a course of treatment:
£1700 for just the face.
£2000 for the face and knees.
I accept these prices are high and are so due to it being a private treatment and it was mentioned this works out at approximately £70 per session of treatment.
I’m afraid at this point is where my good experience ended. I honestly felt like I was be spoken to by a salesman and not a medical professional.
It needs to be kept in mind that I have suffered from Vitiligo for 13 years and when one becomes diagnosed with such a potentially disfiguring condition, I’ve carried out obsessive levels of research on causes and treatments. The second half of my consultation felt like I was being given totally incorrect information purely to gain a “sale” and make me invest in the treatment.
I was first pushed to go for the £2000 treatment and told that I should give up football as this would cause the Vitiligo to reoccur on my knees, this is incorrect as there is no medical evidence to prove that skin trauma actually causes the Vitiligo patches. Since developing Vitiligo I’ve had a number of other injuries(sports related or otherwise) that have caused minor and major lacerations to my skin, none of these areas of skin have ever developed Vitiligo.
When I discussed the Vitiligo on my face, I was told by the consultant:
1. That when Vitiligo develops on the face, I should start have the treatment immediately as it’s a trigger for it to be more aggressive and develop quicker.
and
2. That she could already see it developing around my other eye. Both of these points are incorrect. I developed Vitiligo on my face nearly 2 years ago, and I’ve seen no deterioration in that area(or anywhere else on my body) since. My right eye currently has no signs of Vitiligo in that area, and the consultation was 3 months ago.
These methods appeared to just be scaremongering to make me purchase the treatments out of fear it would get worse.
A medical professional giving such giving such false information is unacceptable in my eyes. Surprisingly, I’m actually still considering having the treatment with London Laser purely because the options for excimer laser in the UK are very limited at this time.
I’m planning to document all my experience as well as post on a number of Vitiligo/Psoriasis forums explaining this to other suffers of conditions that are treated with the Excimer laser and actually demonstrating whether London Laser is a safe and viable option.
I am looking for a response to this e-mail to see and I sincerely hope that London Laser take this into consideration. It is likely that I will be booking my treatment with you soon but I only after I’ve a second consultation and I feel comfortable spending such a large sums of money(with no guarantee the treatment will work) and actually trust the people using such a high powered laser to treat my skin.
Regards
Simon“
A few days later I got this response:
“Dear Simon
Thank you for your mail. The doctor is not available until 4th of May, she will contact you when she returns.
Best regards
secretary
londonlaser“
And that was it! Never heard anything again. She claimed that she had 1000s of Vitiligo sufferers coming from all over the UK, yet I’ve seen nothing about London Laser Clinics on any Vitiligo Forum.
If you’ve used London Laser Clinics for Vitiligo or Psoriasis treatment please get in touch, I’d be interested to hear your experience but otherwise be very cautions. I gave them a chance to repsond and they chose not to, I certainly wont be using them.
12 Comments
I also went to the laser clinic in manchester and had bad experience to with excimer machine, it burnt my daughter so much she passed out in school 3 days later the pain was immense for her so I decided to stop looking for treatments
Kirste
Hi Kirsten,
Thanks for commenting.
I’m sorry to hear that, what Clinic was it? I wouldn’t give up looking for treatments over that one experience. How old is your daughter? I remember reading somewhere that it’s recommended that you go very careful with UVB light treatments with kids under the age of 12(I think?).
There are a number of other things to try!
Regards
Simon.
Hi All,
Please see as follows a step by step on how to build your own UVB-NB hand held. The big advantage of this product is the fact that you can use 1 or 2 bulbs. It means 9w or 18w (2 x 9w).
Recommendations:
1- Please don’t use it without a doctor’s supervision.
2- Please don’t make money with this knowledge.
Step by step:
1- Buy the following car work light:
http://www.amazon.com/Bayco-SL-908-26-Watt-Double-Brite-Fluorescent…
2- Buy the UVB-NB bulbs (1 or 2, it’s up to you):
http://www.ebay.com/itm/Philips-PL-S-9W-01-replacement-narrowband-U…
3- Remove the acrylic transparent cover.
4- Replace the original 13W bulbs for the 9W UVB-NB bulbs carefully. It’s trick. You have to bend the bulb before attaching or detaching.
5- During phototherapy session, remove the acrylic cover. It filters UVB-NB wave lengh.
6- Wear safety glasses during the whole session. Buy one at: http://www.amazon.com/Rugged-Blue-SC-203-Polycarbonate-Visitor/dp/B…
7- Good luck.
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: w w w . researchforvitiligo . com
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…
I said:
“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.”
Listen to my story please! My name is Damon Petrovskii. I live in Russian Federation. My vitiligo was started when I was 19. So much times I’ve tryed to find a good cute or a just cute! And about 8 mouth ago I found page named “Vitilemna” and I though that it will help me and it does! I used the pill ” vitilemna ” and gel ” vitilemna ” and I started getting results ranging from 5th month! Treatment designed for 6 months. results are so quite for now!! I cant believe it! For real. U may not believe to me but it works. Maybe this cure isnt so cool for everybody but I think that everyone can try to use it. Thanks!
Hi I attended this clinic back in 2008 she took £3200 from me no health check no treatment plan nothing the treatment did nothing I have been chasing for a refund but she is no where to be found!
Dr kadir or Zambia is what she goes by
Looking for a good Vitiligo Treatment?
Check it out at:
http://vitiligomap.com/groups/promising-vitiligo-treatments
Hi Simon , my name is Salma and I’m 19, hope youre doing fine , I need you to provide me your email if it’s possible of course , I have some few questions to ask since I’m doing my studies in uk at Sussex university and I would like to find a good treatment , if you can advice me this will be great!
my email : salma.el.mallah.sem@gmail.com
Facebook/insta : Salma El Mallah
Please try to conatact me as soon as possible.
Thank you very much!!
I know that clinic very well, I did my treatment there in 2003-2004 (laser plus Protopic cream). I have cured my face completely (was over 70% affected), and most of my hands.
Hi Simon,
I used the London laser clinic I think between 2008-2009 or 10. I messaged you a long time ago and said I’d write a response to this when I had the time. Ta-Da – now.
Anyhow, similar to yourself and many other people that went to the London Laser Clinic, I had my doubts. The professionalism of the doctor and her set up wasn’t what you’d expect from the price list. I think I paid her around £2-3k for any patches on my head and hands. This money would pay for the treatment which involved getting to the clinic on Saturday mornings – anywhere from 8am-1pm. The payment covered
laser treatments for the first 6 months I think. After this, I would pay her £20 for each treatment. (Yes a big drop in price). I believe after about a year she increased my price to £30 or £35.
I went through many Saturdays travelling down for my treatments which did clear up patches around my eyes, mouth and neck. It did help my hands a bit, but it took time. Dr Kada did suggest getting a prescription of Protopic from my doctor which would work with the laser treatment, however it’s no good if you’re washing your hands everyday.
For me, the treatment worked! I started seeing results within 3 months. However, due to stressful periods in my life, mainly career stress, love life stress, possible depression without realising I was depressed, etc etc, my vitiligo came back. And yes, in the same places where it had healed. So I knew that it was time to stop trying to treat it externally and start thinking about WHEN and what factors caused it to re-appear.
Currently, I am treating my face with Protopic, which surprised me as I started seeing repigmentation within 3 months. However, I have been going through a stressful few years which has caused my vitiligo to return the most it’s ever been.
I’m fighting doctors in the NHS and made them also refer me onto a dietician. I know I’m treatable externally, but I also know that once I’ve healed my skin externally, it may not be forever, as it can return. The root causes need to be found and I’m starting to believe that it could be related to the food we eat which could be causing discrete allergies or chemical imbalances within us, as well as not leading a healthy and balanced lifestyle which is stress free . I’m not a doctor and nor do I have any medical knowledge backing up what I type, but I do believe the body can heal itself if you give it time and balance any un-balances.
Hi Ravi,
Thanks for the comment on the blog. Glad you had a better experience and I’m wishing you the best on your healing journey!
Simon