Search for Affordable, Competent Treatment in Ireland

My search for treatment has been a frustrating and humiliating one so far. One that has led me to leave my current home in Ireland to return to Minnesota, where I can stay with family and receive affordable, competent treatment.

I started showing spots in October 2008, but didn't receive any medication until June 2009. It took me that long to get my GP to take me seriously and give me a referral.

I was sent to a supposed Dermatologist in June of 2009, only to discover that the individual was only a GP with an "interest" in Dermatology, not
a Board Certified Dermatologist. This GP tried to tell me the depigmentation
was caused by athletes foot fungus on my wrist and prescribed nizoral shampoo
to rub on my skin and leave it on. She also prescribed a steroid gel and
protopic. She couldn't tell me any more about treatment options other than what
she read off of the Wikipedia website while I was in her office. I actually knew more about the condition than she did, as a result from my research on the various Vitiligo websites. There is a type of fungus that causes Psoriasis with resulting depigmentation, but not the fungus that causes athletes foot. The woman was completely incompetent on the subject. She knew
nothing of the current vitiligo research programs or current treatment options.
I enquired about PUVA or NB UVB and she said they were unavailable in Ireland.
I requested a referral to a UK specialist, at which time she admitted that
there was a Dermatology Specialist, Dr. Burke, in SE Cork Infirmary. She said
that he was in charge of the only UVA machine in the area and was the only person authorised to
prescribe PUVA therapy, or who would know about NB UVB. She sent a referral to
the infirmary and I received an
appointment date for 8 months later.

In the interim, I purchased a Narrowband UVB light in June 2009 along with Novitil gel. The exposure times I used were from 30 sec. 2x per day for 1 week to 4 min 3x per week over a course of 3 months. Went to 5 min. and burned. Therefore
stopped for 1 month before resuming for another 2 months. After no further
results, I stopped home treatment altogether. I have not used UVB lamp for
three months. I did research other EU clinics, but they were cost prohibitive.
There is a clinic near Berlin, Germany that focuses on treating depigmented
areas if excess hydrogen peroxide in the skin is the cause. The initial consult
takes 2 days and costs 350 euro, plus your cost of airfare and accommodation.
London Dermatology Clinic charges 180 pounds sterling for initial consult, but
again, one has to pay airfare and lodging. If one needs treatment several times
a week, the cost would be astronomical. Dr. Crutchfield at Crutchfield
Dermatology in Egan Minnesota charges 75 US Dollars for initial consult and
then $20 per session for repigmentation.

After the 8-month wait for the Cork South Infirmary, my appointment lasted all of 3 minutes with the "specialist", who didn't bother to sit and discuss the matter with me. He merely leaned against the door frame, arms and legs crossed in a stance of closed communication while pompously professing that he no longer believed in repigmentation
therapy, that it is a waste of time since it typically has to be repeated. He
was of the opinion that a patient should just suffer with it. He refused to discuss a home treatment schedule for the NB UVB
light I purchased or any other treatment option I tried to enquire after. That
is when I decided to return to Minnesota to get my medical needs met.

My initial appointment at Crutchfield Dermatology is for 20, May 2010. I will tune in with the results.

Hopefully I will get some advice on home use of NB UVB. However, if anyone knows of a competent affordable clinic in the South East Cork area of Ireland or Dublin area, please do let me know.

Thanks, I'll check out Valeri's story. I'm interested in what she is doing. And yes you are right that treating from within is important. I have always believed in holistic approach to health, healing and preventive medicine and have been a holistic health and wellness practitioner since 1986. I was already on a special diet and vitamin and herbal therapy regimen for one autoimmune condition, fibromyalgia, before the vitiligo presented itself. Now I have made adjustments to my diet and other internal therapies for treating the vitiligo. The factor I have the most difficulty addressing is the stress factor. Keeping my schedule at a low stress level. I used to get so caught up in doing for others, that I over stressed my own body too often. This does affect the immune system and if a person already has an autoimmune condition, stress reduction and addressing the mind/spirit part of healing is just as important.

As I'm going through my journey of self-healing, I am also coming to better terms with the conditions I've contracted in spite of my stellar holistic diet and why. How can I turn this around to an advantage, in that how can I help other people in their search for healing and acceptance of their condition? I'm pushed to reach out to people in my personal life more, where before I was a solitary person outside of my career. Now, getting involved in online groups like Vitiligo Friends, sharing and reading how others are coping, and volunteering to teach stress-reducing exercise that connects the mind/body/spirit such as Tai Chi and Qigong, brings a profound sense of peace, hope and joy to all involved. In the back of my mind I know I will come to better terms with the vitiligo and not struggle so much with the exterior treatments. In time I will probably be comfortable with it, as my mother has with hers. It's just a process of radical acceptance.

Replies

mary byrne June 8, 2010 at 11:45pm

if you type omnilux and pages from ireland--its more of a beauty thing than medical and im not sure if it really works but i am willing to give anything a try--in ranelagh in dublin-i would do anything to get my pigment back as i used never to wear makeup during the day--you are lucky you can travel to get treatment--i was looking a melanocyte transplant in the uk which seems to be quite sucessful.
- Marie Forrest > mary byrne June 9, 2010 at 12:02am
  
  Yes, I read about the London Dermatology Clinic regarding the transplants. I know its 180 for an initial visit. I asked my Dermatologist here about the transplants and I guess they do that only when other treatments have failed and they are sure that the melanocites are actually dead in those areas. Something to think about.
  - Alex Greiss > Marie Forrest June 9, 2010 at 7:08am
    
    In my opinion you are alot better off trying to heal vitiligo from within, i dont mean the psychological cause. It's true that exterior treatment is potentially hazardous and the effectiveness is minimal at best. I reccomend you read Valeri's story, you can find it on this board if you just search the word "story" you'll find it on the first page. There's a vitiligo diet that's difficult to stick to but has many good results from patients. There's alot to know about treating vitiligo from within. But if you start doing your research now im sure you can come up with a treatment plan or yoursellf. and the chance of resukts in my opinion are much greater than that of any dermatological treatment.
    
    How can dermatologists know what's good for treating vitiligo skin, when virtually no one is concerned enough to find permanent solutions? I mean vitiligo doesn't exist to anyone who doesn't have it. Even my macbook pro recognizes the word vitiligo as a spelling error. We need to 'cure' ourselves and please remember that 'incurable' only means that it needs to be cured from within.
    
    Good luck!
    - Marie Forrest > Alex Greiss June 9, 2010 at 7:56am
      
      Thanks, I'll check out Valeri's story. I'm interested in what she is doing. And yes you are right that treating from within is important. I have always believed in holistic approach to health, healing and preventive medicine and have been a holistic health and wellness practitioner since 1986. I was already on a special diet and vitamin and herbal therapy regimen for one autoimmune condition, fibromyalgia, before the vitiligo presented itself. Now I have made adjustments to my diet and other internal therapies for treating the vitiligo. The factor I have the most difficulty addressing is the stress factor. Keeping my schedule at a low stress level. I used to get so caught up in doing for others, that I over stressed my own body too often. This does affect the immune system and if a person already has an autoimmune condition, stress reduction and addressing the mind/spirit part of healing is just as important.
      
      As I'm going through my journey of self-healing, I am also coming to better terms with the conditions I've contracted in spite of my stellar holistic diet and why. How can I turn this around to an advantage, in that how can I help other people in their search for healing and acceptance of their condition? I'm pushed to reach out to people in my personal life more, where before I was a solitary person outside of my career. Now, getting involved in online groups like Vitiligo Friends, sharing and reading how others are coping, and volunteering to teach stress-reducing exercise that connects the mind/body/spirit such as Tai Chi and Qigong, brings a profound sense of peace, hope and joy to all involved. In the back of my mind I know I will come to better terms with the vitiligo and not struggle so much with the exterior treatments. In time I will probably be comfortable with it, as my mother has with hers. It's just a process of radical acceptance.
    - tania > Alex Greiss June 9, 2010 at 7:41am
      
      It is true that doctors don't care about vitiligo, I took my son 2years to the dermatologist and he told that my son has vitiligo and is nothing to worry about because he is pretty white already and has blue eyes, can you believe that, of course I care about my son!!! I just want to find some hope and any doctor wants to help...
mary byrne June 8, 2010 at 10:15pm

hi-i am from ireland too and discovered this on my face two years ago--i tried looking at dermatoligists too and all they said was dont bother -no ccure etc etc--i bought my own uvb and have been treating it for approx 3 months--did it before also-have been getting a few pigmented spots so if someone tells you that there is no melanin there its a lie--having on my face is such a nightmare-every time i look in the mirror it is all i can see-i treid protopic also but didnt work-i am up to 3minutes on uvb but i burned --i am thinknig of trying omnilux revive in a beauty clinic in dublin--no idea whether it works but i would try anything--the patch is on my chin and is not too big--anyway just said i would say hello
- Marie Forrest > mary byrne June 8, 2010 at 11:40pm
  
  Hello,
  
  Thanks for sharing your experience. I have a home lamp too and also burned from it so wanted to at least consult with a specialist about it, but no luck until I got back to Minneapolis. I did get two spots repigmented from my home UVB lamp though, so it does work, but the other spots are resistant. I am doing the full body UVB therapy at a Dermatology Clinic in Egan, Minnesota. The specialist prescribed using each of these once a day on the spots: Protopic, Vectical vitamin D ointment and a mild steroid mixed with salicylic acid cream, plus UVB 3x/week. Even though the creams are a bit expensive he at least has an income-based payment plan if you don't have health insurance so I only have to pay $58 for the initial consult and $3.00 for each UVB treatment. He did say that it could take at 1-2 months to see results in some areas and up to 6 for resistant spots.
  
  After August I'm hoping to be able to continue the treatment back home so. I'm wondering about this omnilux revive treatment. Which clinic in Dublin offers it? I'm interested in anything that might work and would travel up there from Cork if I have to. None of my resistant spots have started to repigment yet and one is around my mouth. I know what you mean about it being a nightmare. Can't cover it up very effectively and even so, the make-up or camouflage rub off throughout the day.
Andrew Medici May 19, 2010 at 7:35am

I am so sorry to hear about your experience seeking treatment for vitiligo in Ireland. A lot of that behavior is simply inexcusable, especially for medical practitioners.

I went to a dermatologist this morning, and she wrote me the referral I needed to begin narrowband UVB treatment, which she recommends. If the in-clinic treatment regime work, then she said I would be able to start home treatments.

I am cautiously optimistic. And I hope you get positive results soon.
- Marie Forrest > Andrew Medici May 19, 2010 at 7:43am
  
  Thanks Andrew,
  
  I am looking forward to hearing how your treatment goes. I certainly understand cautious optimism. I'm keeping my fingers crossed that the NB UVB will work. There are more aggressive treatments out there like melanocite transplant, but I can only imagine the cost involved.

This reply was deleted.