We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series. You can read the first post here: Too rare to diagnose: Hydroa Vacciniforme.

In 2003 our daughter Simone (then almost six years old) was diagnosed with Hydroa Vacciniforme (HV) by a leading Dutch dermatologist with over 35 years of experience. He listened carefully to our story, retreated for a moment to think and consult some books, and then came back and pointed out the page in a book where HV was described. He had never seen it in his life! After over three months Simone’s illness finally had a name and a history, and we felt like having a future again.

The months before had been devastating for us. After a sudden onset of Simone’s illness in February, without any warnings, together with a local dermatologist we tried to discover what was wrong with her. Of course we thought that if we knew what she had, we could start treatment for her and it would all be over. But it wasn’t that simple. We saw Simone getting worse by the day.

Not knowing that she suddenly suffered from intolerance to UV-A and –B radiation, every day she would play outside and have her blisters dry out in the sun. She looked hideous and hated her skin reactions. We all did. After some bad experiences with people and other children in stores, at the market, at school or on the street, Simone retreated and refused to go outside, even in the backyard. She became very depressed.

Her dermatologist at the time had no clue at all about what he was dealing with; HV is so rare that almost no dermatologist in the Netherlands has ever seen a patient. So ours didn’t recognize what caused Simone’s suffering. He initially gave Simone drugs against viruses that she didn’t need, and prescribed incredibly heavy anti-malarials later on (which I refused to give her because of serious side effects). We started insisting that he would do more to help her, but we became more and more disappointed after consulting him every two weeks for some time.

We felt we should take control and asked for a second opinion. To our surprise the dermatologist was in agreeance. An appointment was made in a hospital in Amsterdam, but the doctors there confirmed that her illness was probably a pox-like virus. Because we ended up in the same circle again we kept protesting to our dermatologist and that paid off again: we could visit another hospital in Amsterdam. As you already read, there we learned that Simone has HV. We sighed from relief and are grateful to this dermatologist every day since.

From that point things changed a little. We started to read on the internet about HV. The cause was unknown, there was no cure, but there seemed to be a possibility that Simone would heal spontaneously during puberty in the years to come. Some kinds of treatment had been tried in the past with other patients, but nothing had appealing results. We concluded we could only do one thing for Simone: prevent the radiation from reaching her skin.

We also found a support group on the internet and joined it. That’s where we discovered that Simone’s story is exemplarily. A difference was that we seemed to be more in control of the situation than parents of other patients worldwide. We got complimented on that by an older HV patient, a man living in Australia, then aged 33. It helped to negate some doubts as to whether we were doing the right thing for our daughter.

At first, we kept Simone indoors until all her lesions had healed. All blisters from HV end up becoming permanent scars, so although she looked much better than before – without thick black crusts and red blisters – she still looked different. Not only did she attract attention with her scars, going outdoors again wearing a large hat, shirts with long sleeves, pants and even gloves in the summer was a bit odd too, to put it mildly.

Simone reluctantly went back to school. To make it easier, we asked her teacher to hand out flyers to the parents of the other children to inform them of her disorder, reassure them that it was not at all contagious and ask for their support and understanding. We even asked them to speak to their children about HV, to avoid Simone being bullied with her disorder. This worked fine in the first few years. Simone started to do a little bit better.

Please feel free to contact us at info@hydroavacciniforme.nl.

Editor’s note

Part two of this post will be published next week. You can read more about HV at http://hydroavacciniforme.nl/

Image reference

Simone’s HV reactions, courtesy of Richard Roosenboom.

We recently invited Richard Roosenboom to share his experiences as a parent of a child with a rare disease. In the coming weeks we will publish part of the Roosenboom’s story in a four post series.

This year, 2012, sees calendars with February 29^th: a rare day that is only seen once in every four years. Thus it is logical that this day is chosen as the worldwide Rare Diseases Day: a day where extra attention is sought for many rare diseases and disorders from which adults and children suffer every day.

Often the causes of rare diseases aren’t known. There’s often no treatment (yet). That’s why the world needs Rare Diseases Day: to show that these patients too are entitled to care and treatment, like any other.

Hydroa Vacciniforme (HV) is one such rare disease.  This is my family’s story, discovering that our daughter suffers from HV, but also learning that our story is exemplarily for most of the HV-patients worldwide.

By North European standards, spring started really early in 2003. The last week of February was unusually sunny and warm. Really nice, as my family enjoyed a short break in Belgium. Every day my wife and I played with the children in the pool of the vacation park, walked its surroundings or played badminton. Our oldest daughter Simone, nearly six years old at the time, showed some sort of skin rash, but nothing to worry about. Yet, after that break, we didn’t stop worrying for a long time….

The day we drove home, I looked into the back mirror and was shocked: Simone had a complete breakout of some kind of fluid-filled blisters. We decided to drive home to the Netherlands and consult our physician there straightaway.

Our doctor diagnosed the blisters as some kind of pox. To be sure, he sent us to a dermatologist the same day. That man was calm and gentle and he radiated confidence, which gave us the feeling that everything would be all right. He prescribed some anti-viral medicine and advised Simone to go into the sun and let her blisters dry out. And that was what we did.

The blistering got worse over the next days. All over Simone’s face, nose and ears, there were thick black crusts now. From that moment, the psychological consequences became apparent. People turned away their eyes and heads in total disgust when they saw her.  That felt horrible. We hoped Simone wouldn’t notice it, but of course she did. A few days later she wouldn’t go outdoors or to school anymore.  Months went by, and we became desperate with the situation.

In June, we visited a large university hospital in Amsterdam, but nothing new or useful came out of that visit, even though Simone was examined by a large team of doctors. So we visited another big hospital in the city some weeks later. Their lead-dermatologist, a respected specialist in the Netherlands, examined Simone, then retreated for a moment and consulted some books, and returned again. He showed us the page with HV on it, and said that he believed this was what Simone suffered from. We read the page and it all came together. Everything we experienced and saw fitted the diagnose: Simone had Hydroa Vacciniforme, an extremely rare disease where the skin is intolerant to both UV-A and –B radiation.

We now knew what it was, and started learning how to cope with it. The very first instruction was to avoid direct sunlight. This advice was the exact opposite to that of the dermatologist who sent Simone into the sun with her vesicles. Sadly, his mistake had huge consequences: Simone has permanent scars in her face and on her ears, on her hands, arms, upper body and feet.

We were so sorry that the dermatologist didn’t recognize the disorder when he examined Simone over and over again. On the other side, HV always occurs in spring and summer, and this was February. And the doctor that diagnosed Simone told us that he knew about the disorder, but had never seen a patient in the Netherlands in his 35 year long career. It was too rare to diagnose, and bad luck for our daughter.

Only two years ago, we heard about the annual Rare Diseases Day. We joined a local Rare Diseases Day event and immediately felt very much at home and understood. Of course we support everything the organization stands for. It would be great if the medical and pharmaceutical worlds pay more attention to rare diseases and the patients who suffer from these. Maybe for new HV-patients misdiagnosis don’t happen that often in the future anymore. So join your local celebration of Rare Diseases Day! Help raise attention for their right to care of your and our loved ones!

Please feel free to contact us at info@hydroavacciniforme.nl.

Editor’s note

You can read more about Rare Diseases Day at http://www.rarediseaseday.org/ and about HV at http://hydroavacciniforme.nl/

Image reference

Simone in her protective sun gear courtesy of Richard Roosenboom.

This is the second of a two part series on vitiligo treatment from guest blogger Liz Tyler, to read the first part, click here. Liz runs @VitiligoProject and the Vitiligo Project blog, an initiative she founded to help others, like her, who are living with vitiligo.

I’ve had vitiligo since childhood and, like many others who have the disorder, I find it a challenge to live with. Whether you’re able to accept your vitiligo or not, it’s needless to say it takes a lot of getting used to. For me, I’ve never been completely comfortable with my skin and with a career in marketing and PR, where image is really important, I’ve always been willing to try new treatments and look for therapies that could help cure it.

Since being diagnosed, I’ve tried a number of treatments. I initially tried homeopathic therapy, which involved taking natrum marina (sea salt) and changing my diet, I then went on to protopic for just a couple of months, followed by steroid cream (clobetasone butyrate). Unfortunately I had no positive change with these treatments. I also saw the British Red Cross for a camouflage session but this was unsuccessful – I have freckles and the person I saw found it hard to find a make-up colour match.

Having put further treatment on hold for a year’s travel, I arrived back in the UK eager to continue with therapy. I went back to the doctor and was referred to a new dermatologist. He decided it was wise to escalate treatments if previous therapies proved ineffective and helped put together a new programme:

1) Protopic (three months)

2) Narrowband UVB light therapy (three months)

3) De-pigmentation (face only)

After trying Protopic for another three months, I moved on to narrowband UVB phototherapy and this has had fantastic results!

The first month of light therapy was challenging, it’s a very demanding course – I went to hospital twice a week for three months. Midway through the light therapy, the head of the phototherapy unit pulled me aside and told me that I should give up treatment as I was young and it didn’t appear to be working. It made me feel terrible as by now I had seen four different doctors and none of them had come up with a solution for me. I really did feel like chucking the towel in, but I chose to stick it out – what else did I have to lose? If I didn’t try, I’d never know – right?

I continued with treatment and I’m very glad I did. Over the next few weeks, tiny freckles began to appear in my smaller vitiligo patches. I was sure it was wishful thinking, but my nurse agreed that I was reacting to the treatment. A few more weeks passed and the repigmentation continued in all of the patches that were exposed to the light. It was amazing. After so long, something was working!

Unfortunately, three months of treatment was soon over and I had reached my dosage limit. I was starting to burn after the sessions and had to stop.

I had a follow-up meeting with yet another new dermatologist who agreed I had to stop NB-UVB therapy, but by no means stop treatment completely! He revisited the agreed programme and told me I shouldn’t start depigmentation treatment yet, as he felt I was too young. He asked me if I had ever had a blood test to see whether I had a thyroid problem (thyroid problems are apparently quite common in young females with vitiligo) and that he’d like me to go back onto a steroid cream – this time Eumovate (clobestsol propionate), a stronger variation. He is the first of five doctors to have mentioned a possible thyroid problem, so I was pretty amazed. I am currently still on the steroid treatment and am actually due back this week for the results!

If you’re like me and feel like you need to do something about your vitiligo, in my experience, there’s really no harm in trying and experimenting with different treatments. Just be aware of the risks and make sure you’re doing it the right way, through your doctor, and for the right reasons. Only do what you feel comfortable doing and don’t rush into it.

Additionally, if you feel your doctor isn’t prescribing you the treatment you had in mind – ask to discuss it and see what you can do about it. Every doctor is different; it took me a lot of visits before I felt I was being taken seriously – so don’t give up!

Most importantly, everyone reacts differently to treatments and what works for one person may not work for another – always go in knowing that it may not necessarily work. I’ve spent a long time trying different treatments and, although only one of them has shown a positive result, I don’t regret it in the slightest. If anything, I feel satisfied knowing I’ve tried the different options and that I’ve given it a go, instead of waiting down the line and wondering, “What if?”.

Image courtesy of Liz Tyler

We’re delighted to host guest blogger Liz Tyler. Liz runs @VitiligoProject and the Vitiligo Project blog, an initiative she founded to help others, like her, who are living with vitiligo. This is the first of a two part series on Liz’s personal treatment experience.

I’ve had vitiligo for thirteen years and like many, my journey of living with vitiligo hasn’t been an easy one. In this day and age when we’re all made to think we need to look like Kate Moss – it’s needless to say having patchy skin is a setback.

I have vitiligo in most areas of my body: around my eyes, on my cheek, hips, legs, ankles, elbows, hands, groin area and hair. I first began to contract it when I was about 11, in between my thighs – as I was so young I didn’t really know if patchy skin was normal or not, plus being in an intimate place I chose to keep it to myself.

It didn’t really bother me at first because my patches were hidden. My vitiligo began to spread progressively when I was 16 and throughout my time at University. It soon spread onto visible areas – my hands and face. That’s when living with vitiligo became a problem. I just couldn’t deal with it being in a place people would so blatantly see.

It’s really hard for me to admit it, but vitiligo impacts me every day. It’s the first thing I see when I look in the mirror and when I meet new people I can’t help but assume they’re looking at my skin. I know I shouldn’t, but I can’t help it because, other than the odd spot, their skin looks perfect – and I wonder if they see what I see.

Initially, I went to my doctors and saw a newly qualified doctor. I already knew it was vitiligo, but I needed to do something about it. To be honest I felt humiliated – she examined me, told me it was a disease and suggested I wore a hat and kept out the sun. Not the response I was looking for. She gave me a stack of information I had already found online and I felt very dissatisfied.

I looked into treatments by myself and joined many vitiligo forums on a hunt for as much information I could find. I eventually built up the courage to go back to the doctors and saw a lovely woman who recommended Protopic (tacrolimus). I told her how upset I was after my last visit and she referred me to a dermatologist.

Once I met with my dermatologist, I was taken off Protopic (which hadn’t shown any positive results) and was put straight onto steroid cream (Eumovate, clobetasone butrate) for three months. She also sent me to the British Red Cross for camouflage. The camouflage session didn’t go down very well as I have freckles and they couldn’t find a make-up colour match, but found my own alternative that seemed to work. After the three months I hadn’t seen any results with steroid cream so stopped the treatment. During that time, I went travelling so postponed further treatment for a year.

You can read the second part of Liz’s blog here. Additionally, you can read more about those living with vitiligo from guest bloggers Lee Thomas and Ogo Maduewesi.  

Image courtesy of Liz Tyler

This is the second blog in a two-part series by Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (www.vitsaf.org); to view the first part, click here.  In this post Ogo continues her discussion about the types of difficulties West Africans with vitiligo confront on a daily basis.

Although people – particularly in my country, Nigeria – will always give you the impression that they don’t have an issue with vitiligo, many do segregate or ostracise those with the condition, especially in the rural areas. There is a social stigma attached to vitiligo, affecting the social well-being of patients. Especially in African countries, where the people are dark-skinned and the contrast to their natural skin tone is more obvious. 

Childhood

Parents and elders have not helped matters. You see them warning their children and charges not to go near other children or people with vitiligo, as if it were contagious or a ‘curse’ might befall them. This video is based on one such true story:

On another occasion, a parent shared with me how her daughter’s school called her to enquire about the white patches which had suddenly appeared on her daughter. Other parents were threatening to withdraw their children if her daughter was not removed from the school.

Rural Africa

Perhaps the worst stigmatisation of vitiligo occurs in rural and remote Africa. For people living in these areas and villages the social stigma and isolation is even greater. Most of them cannot join in meetings or activities and some are even ex-communicated, faced to live in oppression. They have no support from their families who believe that they bring shame. All of this has roots in supernatural beliefs because people refuse to see and understand life from its true and natural perspective. They think the wrath of the Gods is at work and want to avoid contracting vitiligo themselves.

The height of ignorance is such that people mistake vitiligo for a contagious disease. One man with vitiligo told me how a prophet warned him to stay away from his own family for the danger that he would infect them all. These people fail to understand that the person suffers, not only externally, but also experiences internal psychological trauma and depression.

Vitiligo is a non-contagious skin condition that occurs in all sexes and races equally. The myth about vitiligo being contagious is likely the result of a common fear: people stay away from anything different. This is typical, not only of Africans, but of the whole human race.

Editor’s note: The embedded video above is part of a series created by VITSAF to help combat the social stigma of vitiligo in West Africa. You can view all five videos in this series below:

http://www.youtube.com/watch?v=v_wBWmewlhE 
http://www.youtube.com/watch?v=HiwbYbHLnSA
http://www.youtube.com/watch?v=svYjaVMkHNw
http://www.youtube.com/watch?v=Ll9MA2Wefqo
http://www.youtube.com/watch?v=yLTOcCgET00 

VITSAF is also working on a documentary entitled More to Life – A Documentary on Vitiligo, keep an eye on the Youtube channel above for more information.

Image reference

‘The road ends here’ uploaded to flickr.com by ‘Barefoot In Florida’ on 25 December 2009, <http://www.flickr.com/photos/i_level_news/4668168146/in/photostream/>.

In the first of a two-part series, guest blogger Ogo Maduewesi, founder of the Vitiligo Support and Awareness Foundation (www.vitsaf.org), speaks candidly about the stigma associated with vitiligo and the challenges faced by sufferers in West Africa.

Vitiligo is a hugely stigmatised condition, especially in Africa. Facing not only a visible, disfiguring skin problem, many patients also endure psychological, psychosocial and emotional stress from the disease and its stigma. This usually results in increased susceptibility to vitiligo: the stress of stigmatisation can often lead to further progression of the disease.

Social, religious and tribal factors play a significant role in stigmatisation in Africa. The main contributing factor to social stigma is that vitiligo is considered by many as a wrath of the Gods upon an individual. Further, because little or nothing had been heard about vitiligo in West Africa before now, people were left to make assumptions or create fantasies about the condition.

Tribal beliefs

One particular tribe in Nigeria strongly believes that anyone who has vitiligo has offended the Gods by eating a particular food forbidden by his/her family and that until the Gods are appeased the vitiligo will not go away.

Another tribe believes that it’s a curse or nemesis: they practically see a person with vitiligo as someone who has committed an offence; the Gods are visiting with vitiligo vengeance. In one instance I know of, a husband left his wife and kids because she suddenly started turning white, he believed it was a nemesis from her family. To some, marriage has become a distant dream. Even when two people agree to wed, the family imposes and cancels their nuptials (VITSAF has tried to address this issue in one of its recent videos linked below).

The role of ‘magic’

This is a highly religious and superstitious part of the world and, as I’ve said in an earlier post, the words of local prophets and diabolical doctors (commonly called Dibia, Babalawo) weigh heavily. Their advice plays a large part in initial vitiligo treatment, until a certain stage of the condition’s progression, by which point so many resources have been wasted that could have been put to better use.

The most common vitiligo myth in Africa is that it’s inflicted by bad or evil people through magical powers. I have been told many times that such people brought vitiligo upon me to destroy my face so that I wouldn’t be able to find a husband.

I was called, at one point, to intervene between two families in a deep squabble: one was accusing the other of having inflicted vitiligo upon one of their members through magical powers. These beliefs are so strong that even when I meet some sufferers and try to counsel them, they look me straight in the face and tell me that their condition is different from mine: mine is a health condition, theirs is spiritual attack.

Editor’s note: Part two will be published shortly. VITSAF has created a series of videos to help combat the social stigma of vitiligo in West Africa, you can view all five videos in the series below:

http://www.youtube.com/watch?v=v_wBWmewlhE
http://www.youtube.com/watch?v=HiwbYbHLnSA
http://www.youtube.com/watch?v=svYjaVMkHNw
http://www.youtube.com/watch?v=Ll9MA2Wefqo
http://www.youtube.com/watch?v=yLTOcCgET00

Image reference:

“Africa Satellite Plan” By NASA, via Wikimedia Commons see http://commons.wikimedia.org/wiki/File:Africa_satellite_plane.jpg for license details.

As part of our ongoing guest blogger series, we’ve invited Lee Thomas to share his experiences on the Clinuvel blog. Lee is an award winning US journalist who has spoken widely about his experiences with vitiligo, including in a documentary entitled ‘Turning White’. You can learn more about Lee at http://www.leethomas.com/

–

“What the…?”  “Why me…?”

“Where is that trucking school info…?”

“My career is…”

I couldn’t even finish most sentences.

It seemed like I was walking the green mile to my professional doom when I left the doctor’s office on that summer day in New York. I’m sure I was walking by thousands of moments of organic urban entertainment that would command most people’s attention in the Big Apple. But the argument in my head that seemed to be slipping out into a loud conversation, with myself, was much more engrossing and impending.

The freak out will happen.

It’s part of the journey. I was a young, dark skinned, African American TV reporter with white spots starting to appear on my face and the rest of my body.  I thought I was going to lose it all.

Yes, I went through fear and loathing.

Yes, I went through pity and pain.

But I went through it and didn’t sit and wallow.

The war begins.

It’s “emotional warfare”, the battle you wage in your mind. You tell yourself all of these bad things and then you go out into the big bad world and people’s negative reactions fuel your internal dialogue.

The mental fight is about finding and acknowledging the good things: they are there and they are just as real as the tough stuff.

For every five people that don’t react to the sight of me, there is maybe one that gives out a negative comment. For every good thing that is happening in life, there is one dark cloud. It can not only block your vision of a sunny future, but make you begin to twist your self-image, sending you into hiding.

Vitiligo can drive you to seclusion. I spoke to a woman that had come to hear me speak, she hadn’t been out of the house in two months and her brother brought her to one of my lectures.  He said my story gave her inspiration. “She hasn’t wanted to go out in a while.” Her brother said, “your story brought her to tears and she put on her make up and here we are”.

I am honored.

Vitiligo is not an easy road, but you can live a full and happy life with this disease. I am now a TV anchor with a beautiful daughter that I love very much.  I am living my dream and, yes, the spots just keep coming.

Positivity is worth the fight. And when someone challenges your good day or your state of being, don’t let them have it. Fight through it, work around it, adapt and overcome.

Image courtesy of Lee Thomas

As part of our ongoing guest blog series, we have invited Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (VITSAF) to share her unique experiences with vitiligo. You can visit VITSAF online at www.vitsaf.org

There are no statistics on the number of vitiligo patients in Africa or West Africa; but we truly have so many cases. The skin colour contrast makes it very obvious, more so than how it appears on a white person’s skin.

We work with the common statistics that 1-2% of the World’s population have vitiligo. To get an accurate number in Africa would be very difficult because the majority of people living with vitiligo quickly lose hope and no longer visit their skin clinic or dermatologist.

From founding and running VITSAF (a patient–driven, patient–advocate, not for profit organisation incorporated in Nigeria and working around Africa), my experience has shown that quite a number of people are living with vitiligo; it is not difficult to find people with vitiligo even though they are not usually on the streets. There is a clear need for support and understanding of the condition, which has made VITSAF a welcome development for those affected. We work passionately to relieve the agony of blacks turning white, create awareness of related of skin diseases and empower the disfigured.

It is my dream that, in the future, people with vitiligo will not be shunned or ostracised, but rather that their condition will be accepted and understood by the larger community. I also look forward to the day when we can offer reliable, affordable treatments to sufferers. In the meantime, VITSAF will continue to support individuals in West Africa with vitiligo and link them to useful psychological and medical resources. We hope that, through our work, we can help people with this condition step out with more confidence to make the most of their lives.

Editor’s note: for more about vitiligo support and VITSAF’s work in West Africa, visit www.vitsaf.org

Image courtesy of VITSAF.

As part of our ongoing guest blog series, we have invited Ogo Maduewesi of the Vitiligo Support and Awareness Foundation (VITSAF) to share her unique experiences with vitiligo. You can visit VITSAF online at www.vitsaf.org

It seemed as though vitiligo was like a newly discovered health condition in West Africa when Vitiligo Support and Awareness Foundation (VITSAF) started working on the cause. It’s a condition about which the majority of West Africans (95%) knew nothing, yet with which so many people in the community were living.

Vitiligo is an important skin condition, having a major impact on the Quality of Life (QoL) of patients. It is one of the most psychologically, emotionally and psychosocially devastating chronic skin conditions, which has a major impact on both patients and their families; parents even tend to hide their children with the condition from public gaze. Yet the impact of vitiligo is still underrated and underestimated. The general public seems so ignorant of this condition and the effect of segregation, stigma and rejection on those affected (including family and friends). Often you hear statements like ‘there is nothing medically wrong with you’ or ‘change in appearance does not kill.’ Still, I know the major impact of the disease: how productive can a depressed man who is emotionally and psychologically damaged be?

Africa in general is a very interesting continent: anything we don’t have knowledge of becomes a curse, nemesis or the result of some magical powers. These beliefs have really cost people so much: a condition like vitiligo usually first receives the attention of miracle focused Pastors, then some Native Doctors and, as it progresses, the hospital is finally remembered and consulted. Even then, help and treatment can be difficult to come by.

VITSAF came about from my own experiences – a lady living with vitiligo and the journey to find help for others affected by this disease – as there seemed to be no help anywhere. It was formed to educate the general public in order to lessen the segregation and stigmatization that accompanies vitiligo. VITSAF’s one major goal is to achieve extensive vitiligo awareness and enlightenment to positively influence the perception of the general public, medical and social community in West Africa, and Africa, and ultimately to provide a Specialist Skin Center in Nigeria for West Africa. We also offer much needed support and help to those affected by vitiligo by making vitiligo lifestyle products and programs available.

VITSAF’s greatest wish is to achieve a Vitiligo World Day for Awareness and Enlightenment to really bring the cause to the forefront of people’s minds.

You can learn more at www.vitsaf.org

Editor’s note: Ogo has proposed the creation of a World Vitiligo Day to help raise awareness of vitiligo and its impact. You can join the discussion online at the VITSAF Blog.

Image courtesy of VITSAF.

Following a curious tweet on her ‘sun allergy’ we invited Amanda from Texas to share her experiences as a guest blogger in the hope that they may help others. This is the second of two parts, you can read part one here.

Hiding from the sun wasn’t an option. Granted, I was reluctant to incur the wrath of UV light: the itching, the bumps, the disfiguration that affected my confidence. Thankfully my PLE was confined to my arms.

Yet, with dermatologists telling me nothing could be done outside an occasional cortisone injection, I was determined to explore any and all treatment options.

My first attempt? An expensive oral antioxidant with fern extract, long prized by those in Central America for its anti-inflammatory properties. While my condition didn’t worsen the pills didn’t offer the protection promised.

I quickly moved on my next option: a topical cream prescribed by my doctor. Apply this and the rash should clear up in no time, they said. Another pricey treatment (USD$700!), it did little more than sting my skin and make me smell like a vat of petroleum. After trying to screen myself from the sun with vitamins and cream, I decided to try and block it all together with heavy, UV-protective clothing. Much to my horror that didn’t work either.

It’s been almost ten years since my original PLE diagnosis. I wish I could say it’s gotten better but, in fact, it’s gotten worse. Many of those report their symptoms improve over the course of a season, their skin “hardening” with repeated exposure, but not me. Something as simple as a half hour spent driving my car can leave me with an outbreak all over my hands.

The rash once confined to my arm has spread to my fingers, my feet, my neck, chest and face. I’m also experiencing other autoimmune symptoms beyond skin irritation: headaches, sinus congestion, etc.

For now, I’ll wait indoors. I try not to spend time in the mid-day sun if it can be helped and have become a consummate pro when it comes to seeking out shadows. I have a wardrobe filled with long-sleeved shirts and a life filled with very understanding friends and family. A sense of humor helps as well, especially the endless vampire jokes that come my way.

What’s next for me? Watching the research roll in has been gratifying, as has learning that I’m not alone on this journey. If my story can serve as a comfort to anyone else wondering what that strange rash is on their arm, it’s well worth sharing.

Updated editor’s note: we’re hosting a discussion on online resources for PLE on our Facebook Group, the Photoprotection Network head across and let us know what you’ve found useful/valuable.

Image reference:

“coreopsis on the first day of Summer” uploaded to Flickr.com by gurdonark on January 2, 2006 <http://www.flickr.com/photos/46183897@N00/4722310313/>