Vitiligo: Caring for the Skin You're In. World Skin Day 14th October 2022

We aren’t talking art today, but something just as important!
It’s World Skin Day today and I was invited by my dermatologist and The Australasian College of Dermatologists to discuss the disease vitiligo.

Vitiligo is an autoimmune condition that targets the melanin in your skin. The disease strips the skin of the pigment, the stuff which protects you from the harmful rays of the sun. This pigment is called melanin.

I was diagnosed with the disease about 5-6 years ago. It has been a long journey but I’m happy to say that the disease has stopped (fingers crossed) and the white patches now have new melanin growing. It's truly a miracle and I’m thrilled. It’s a very personal and hard journey but I’m going to share the interview in the hope that I can give someone the courage to beat vitiligo or any other disease they are living with.

So here is the interview with Mariam Zahid, Engagement Manager, ACD

Please get in touch with your GP or dermatologist to seek professional help.

Yours in art and health,
Bec xoxo

Mariam Zahid: If you could say your full name for me and any information that I should know about your cultural background, how long have you been in Australia? What do you do? Are there any other languages that you speak and whether you live in New South Wales?

Rebecca Rath: Rath is my maiden name. I've been recently divorced. My previous name was Stenz, but my maiden name is Rath. I'm 47 years old, 48 in December. I've always lived in Australia. I was born in Manly, NSW. My cultural background is English and Scottish. I think that there might be Swiss in there. I moved to the Hunter Valley about 17 years ago. I live in a town called Pokolbin. I have a small vineyard. I'm a landscaper painter.

Mariam: How were you first diagnosed with vitiligo? When did you first start showing symptoms?

Bec: I think it was about five to six years ago, I noticed a patch on my chest. I thought: “ Oh, that's really strange. There's no colour there”. And then it went away. And I thought of it as nothing. Then I was going through a very stressful time in my life, and I saw a patch appear on my face.

I got a referral to a dermatologist in Newcastle. I was seeing him for maybe 18 months where he was prescribing me things like creams. He is still my Dermatologist in Newcastle. When I was going through a stressful time, the vitiligo was quite bad. I've got a photo where a lot of my face was white. But it's pretty much back to normal. There's a little bit under my eyes, hands and feet.

 It was really affecting my quality of life. I felt I couldn't go outside a lot because I was really scared of the sun. I was looking at it holistically as well. I was looking at other things in my life such as food, lifestyle, stress management. I sought the help from a Sydney dermatologist at the Skin Hospital. I've been seeing her for a couple of years now. The change has been extraordinary.

Mariam: How was your vitiligo diagnosed?

Bec: Yes he did a biopsy and when it came back he said that there was no melanin there and that I had vitiligo. It's an autoimmune disease.

Mariam: Before you got diagnosed with vitiligo, did you know about this condition? Like, were you aware of it?

Bec: No, I mean Michael Jackson had it. Just the basic understanding of it. I didn't really know what it was about and it’s funny now that I'm healing, it's trendy to have the disease.

Mariam: The notion of embracing your skin and vitiligo have really come together, and you see a lot of vitiligo stories in the news recently. Just going back to your journey, at the time when you were diagnosed with vitiligo, do you think there were enough people around you who knew about it? What was it like living with vitiligo and its impact on your quality of life?

Bec: It was terrible. I was very self-conscious.  A lot of people said that the melanin would never grow back. Other health care professionals plus other people with opinions said the same “ no, the melanin won't grow back. Once it's gone, it's gone forever”. But I just decided that I was going to get better. I didn't want to believe them. I knew that I could heal. I just needed to find a way, so I just never gave up.

My derma was amazing, and he kept me informed of what new medicines or treatments were out there. I felt I needed to go to Sydney and maybe see someone who specialised in vitiligo. That’s when I found the Skin Hospital in Sydney.

When you go to the clinic, they get you to fill out a form of your quality of life and how much your skin condition is affecting you. I can't remember the name of the test, but apparently, I was 16/30 on the test which I’m told is high. And now I'm 3/30. This meant that the higher the score the less happy I was with life due to the skin condition. It's not affecting my life as much now which reflects in my score.

Mariam: I can understand it's not easy. And I think there's a big aspect with skin, hair and nail conditions that unless you are not experiencing it, you don’t fully understand.

If I ask you, what do you think was the biggest challenge for you, would you say? I know, you said that, you know, you restricted your life, you couldn't go out as much.

Bec: I was very self-conscious. I wear sunscreen religiously anyway. But my chances of skin cancer were extreme. I live on the land. I'm a landscape painter. I paint outside. I have two boys, I'm an outdoor person. So not being outdoors that was hard. I never owned the fact that I was never going to be able to go outside. I just knew I had to get better.

Mariam: Did you do your online research before seeing a dermatologist? And how long actually did you have to wait to see a dermatologist?

Bec: Oh, not very long. It was about a four week wait.

Mariam: Were you doing anything in the middle of your waiting period? Like were you researching.

Bec: I did. I looked at it holistically and my dermatologist encouraged that aspect as well. I really looked at my health in terms of like what I was eating, so I found that eating was important. Looking at inflammatory foods. I looked at that and there's lots of information out there whether it's right or wrong, I still wanted to look at everything and not exclude anything. And I looked at other autoimmune conditions as well, how many there are and how people were currently looking at them.

 I became a Reiki Master as well. I looked at stress management together with all different modalities of healing. I read many books on healing and kept an open mind to healing. It was a holistic approach. When I saw the Sydney dermatologist, it all kind of fell into place, because she encouraged me to get blood tests and look at other things that might be going on inside me as well. I have since been diagnosed with Hashimotos, which thankfully isn’t very active.

Mariam: And if I asked you what do you say that people take for granted but you can't because of your experience with vitiligo?

Bec: I think people generally take their skin for granted. I get upset when I see people go to the beach without sunscreen, or they don't wear a hat. I think people forget that it's your biggest organ. And it really needs to be treated with respect. I always have looked after my health, but when the vitiligo came, it really taught me many lessons particularly self-care. I don't think I really looked after myself. Being a mum, it is challenging to put yourself first. So, do you think that it's the language difficulty for people in terms of accessing timely care?

Mariam: Absolutely, it is one of the most significant barriers. And the way you were able to access information, you were able to put yourself on a path and prioritise your health and get the specialist care to get better, which is what everyone should be doing, and is our message for the World Skin Health Day.

Bec: It’s probably also self -esteem, I have struggled with self-esteem. I looked at myself and went okay, how, can I access information to help me heal? Looking at that I looked at mental health as well I feel that helped my healing process as well.

Mariam: Definitely. Definitely.

Bec: That’s a shame that people think of vitiligo as a stigma.

Mariam: Definitely. More education and awareness are needed. So, when you were diagnosed with vitiligo or in your research, did you come across any support groups that exist throughout Australia that help people with vitiligo?

Bec: No, I found one Facebook group, but they weren't active. I don't know anybody else with it. Although, at times, it felt quite lonely. It was also good because I never wanted to own the disease either. I never said it's my vitiligo. For me I also like to visit your website for information. There were dark times but I never lost hope that I would heal. I think my dermatologist and her positivity was amazing. When I saw her, it was probably two or three years ago, I was at my lowest. And she's such a wonderful ball of energy. And with her by my side, I had no doubt that I would be healed with her help, because she's confident and her positivity was just paramount in my support. It’s a team effort.

Mariam: This was my next question. How has seeing a dermatologist helped with your overall condition? Do you think you were able to discuss the impact and that she was able to really factor in the mental health aspect of your condition in her treatments?

Bec: Oh, absolutely. Yeah, she's amazing.  Going to her certainly strengthened my resolve that I knew that this would be temporary. And she did look at everything. It's not like she just focused on the skin. She looked at my mental health, what was going on personally in my life, foods that I eat…

Mariam: When you go for your appointments do you prepare for them? Like, are there questions that you think about beforehand that you want to ask your doctor?

Bec: Yes, absolutely. I see her once every six months now. But it was every three months before. I would have a list of questions I'd ask her because I was doing all that other research, I really wanted her professional opinion on things like I’d read that online, or that I had seen on YouTube, I wanted to speak to her and asked her professional opinion, because YouTube is different from actually speaking to a doctor.

Mariam: That's actually true. One thing that we have come across a lot is that often people tend to rely on information that they've heard from friends and family or randomly on the internet. But what is important is to understand that everyone's skin journey is different and it's really important that you rely on that credible information from trustworthy sources or from a specialist in order to get an informed opinion on your condition. So, it's great that you were able to get that information and you were able to verify from your dermatologist to what extent that information is true. Do you have any tips or suggestions for people who have vitiligo?

Bec: There's hope. Don't give up on yourself. There's help out there. See a great dermatologist who specialises in your skin condition. It is a team effort. I have some wonderful dermatologists. And my family have been great too. So, don't give up on yourself. You're worth it. Looking at mental health, meditate, and exercise. Maybe it's a reminder to take a step back and put your self-care ahead of everything else. And that you're worth it.

Mariam: Absolutely. And I really like your message about how people, even though skin is the largest organ of our body, tend to take it for granted. I think these are all the questions I had for you.

Bec: It’s funny. This time two years ago, I took a photo of myself because I was low. I can show it to you. I had this feeling that in a couple of years, you're going to look back and go: “Wow, was that really you?” And that's where I am now.