Living with vitiligo
When you are first diagnosed with vitiligo, it is a shock. It may be difficult to get information about the disease and if you search on the Internet you will find a disconcerting abundance of sites, all promising a cure. Your anxiety grows as you discover there is no certainty of a cure, and you have to cope on a daily basis with intrusive staring if your vitiligo is noticeable. Some find they are stared at, teased or bullied. Moreover, no-one seems able to reassure you about whether it will spread or not. Some people find themselves withdrawing from activities, or they may find it hard to form or maintain relationships. Body image is affected and many people lose some of their sense of self-esteem. These psychological effects do not seem to be related to how widespread or visible the vitiligo is.
The psychological effect of skin diseases is now much better recognised and understood by psychologists, doctors and dermatologists. There has been some research into the effects of counselling on patients` ability to cope and learn to live with their vitiligo.
Counselling can be helpful in coming to terms with these issues and studies using cognitive behavioural therapy have shown promising outcomes, but more research is needed.
Your GP has access to a counsellor but there may be a long wait.
It is also possible to go privately but this can cost anything from £30 to £70 per session. The British Association of Counselling and Psychotherapy offers advice about finding the right counsellor. (www.bacp.co.uk)
Changing Faces, a charity who offer services for children and adults in the UK who are living with conditions, marks or scars that affect their appearance, whether on the face or body, offer one-to-one sessions in person, via telephone and online. Please do get in touch with us by emailing email@example.com if you would like to talk more about this.
Most people with vitiligo need to take extra care of their skin in warmer weather because they are particularly vulnerable to sunburn. White skin patches have no natural protection against the sun’s rays, unlike normal skin which is protected by melanin (skin pigment). Unprotected vitiligo skin is highly likely to burn quickly. Not only is sunburn painful, but it might stimulate the vitiligo to spread in some people. Sunburn also increases the risk of skin cancer. We need some sunlight to keep healthy – it is our main source of Vitamin D, but skin needs to be protected from sun damage.
Use sunblock or sunscreen products
You need to choose a product which protects you from the ultraviolet light in the sun’s rays. There are two types of rays:
- UVA (long rays) penetrate deep into the skin and can cause dryness and wrinkles, as well as contributing to burning. The extent of protection against UVA rays is indicated by stars. Vitiligo skin requires at least 4 stars UVA protection ****
- UVB (medium rays) are the main cause of sunburn. The extent of protection against UVB rays is indicated by the Skin Protection Factor (SPF) number, which ranges from 2 to 50+. Vitiligo skin requires at least SPF 25.
Your sun protection product needs to be water-resistant or preferably waterproof if you are going in the water. Remember that sun can penetrate water to a depth of 10 metres.
Take other measures
To avoid burning it is important not to rely too much on sunblock. Some UV rays will go through any sunscreen. You can also protect your skin by wearing loose cotton clothes, a sunhat and sunglasses. Keep in the shade, especially at the hottest time of day (11am to 3pm). This is particularly important for children, and especially babies, whose skin is so delicate.
There is so far no evidence that confirms a direct link between nutrition and vitiligo.
However, some studies suggest changing your diet or adding supplements could have a positive impact.
A nutrient-dense diet is always advisable, not only for vitiligo but for optimum health. A plant-based diet rich in antioxidants, low in inflammatory foods and possibly also gluten-free, may have a beneficial effect on vitiligo.
Eat an antioxidant-rich diet
One potential cause of vitiligo is the effect of stress on the cells that produce melanin. Less melanin means more skin depigmentation.
You can try to protect yourself against this stress by eating a diet high in antioxidants. One study carried out on mice with vitiligo showed significant levels of repigmentation when they ate foods high in antioxidants.
Vegetables, fruits, nuts, seeds and spices are all high in antioxidants. A good rule of thumb for eating enough antioxidants is to eat as many different coloured fruit and vegetables as possible: “eat the rainbow”.
Foods high in omega-3 (but lower in omega-6) could also help improve your symptoms. These include oily fish, nuts, seeds and algae.
A plant-based diet has been shown to be very high in antioxidants (as well as a whole host of other benefits!). This is not the same as a vegan diet because you can still eat some animal products. However, the majority of your diet is made up of plants.
Try a gluten-free diet
One study on a vitiligo patient found that following a gluten-free diet resulted in substantial repigmentation. The case study saw significant changes after nine-month period.
The study was only carried out on one person, but you could cut gluten from your diet to see if it works for you.
One reason for the improvements in this patient could be because gluten is an inflammatory food.
Avoid inflammatory foods
Avoiding foods that cause an inflammatory response may help reduce the symptoms of vitiligo.
Inflammatory foods include:
- processed meats
- sugary drinks
- trans fats, found in fried foods
- white bread
- white pasta
- soybean oil and vegetable oil
- processed snack foods, such as chips and crackers
- desserts, such as cookies, candy, and ice cream
- excess alcohol
- excessive carbohydrates
Inflammatory foods make it harder for your gut to work and remain healthy. A healthy gut helps decrease low-grade inflammation in the body. Fibre, probiotic and prebiotic foods, such as sauerkraut, can help improve gut health.
Although it is considered preferable to consume nutrients via whole foods rather than with supplements, studies suggest some supplements can aid repigmentation in vitiligo patients:
- ginkgo biloba
- alpha lipoic acid
- vitamin C
- vitamin E
- polyunsaturated fatty acids (omega-3)
It is advisable to see the advice of a professional before taking high strength vitamin D supplements. The dose needs to be balanced to avoid vitamin D toxicity. Too much vitamin D can lead to a build-up of calcium in the blood (hypercalcemia), which may cause nausea and vomiting.
It may be difficult for you, as a parent or carer, to talk to your child about vitiligo because of your own feelings about the condition. It is also important that you recognise your own feelings towards vitiligo as this may be an emotional time for you also. So if you feel like you are struggling, do speak to a healthcare professional. You can also join supportive groups like The Vitiligo Society Parent Support Network, email firstname.lastname@example.org for more information.
How to get medical advice about your child’s vitiligo
As you may know, going to the doctor or specialist with your child can be very stressful. You will probably be discussing their vitiligo in front of them, which may cause your child distress, especially if they are not fully prepared to see the doctor. It is advisable to discuss the visit beforehand and write down the questions you (or your child) want to ask before you go.
As a parent, you will naturally want to get the best treatment for your child and try every medical option open. However, you need to be aware that your efforts to find a treatment may be misunderstood by your child. It is possible that they may think that this means you are ashamed of their condition and ultimately that you don’t love them. It will be beneficial to review some of the treatment options beforehand with your child and understand if they want to try any of the options. Ultimately, your child should understand that accepting vitiligo and not treating it is also an option and that they will have your support.
You can help your child cope with concerns about vitiligo by making them feel secure and loved for who they are. The more confident they are in managing any difficulties they have, the more positive they will feel about the future.
Read more about treatment options for vitiligo.
Meet our young ambassadors
We believe in the power of children seeing peers with vitiligo being able to thrive and embrace their unique appearance. Our Society is really fortunate to have a team of incredible young ambassadors who are unafraid to show their spots, speak out about their vitiligo, and share words of encourage for other kids to do the same!
Meet Nikayah, she’s 9 years old and very happy with her unique skin…
“‘You are beautiful!’ Is what most people say to me when they see my light patches. My name is Nikayah and I am 9yrs old. My mum noticed my first light patch when I was 2 yrs old. She didn’t think much of it until more appeared 2yrs later. Some of my light patches are in my hair which makes my hair turn grey! How cool is that!
My light patches are a constant reminder that we are all beautiful and unique. By talking about Vitiligo we can spread awareness and promote a positive self image for us all. I am so happy in the skin that I am in… Even though some have disappeared or become smaller, I want them all of my light patches to come back. I never want my light patches to go!”
Follow Nikayah’s journey on Instagram: @his_workofart
Meet Charlie, he’s 9 years old and enjoys drawing, swimming and football…
“I was about 4 years old when I noticed a small white patch on my chin. Then it spread and a new spot appeared on my neck. At the beginning, I wanted it to go away. I didn’t think it suited me and I just wanted my normal skin back.
Now I’ve had vitiligo for a few years, I think it makes me feel special. It is part of who I am and it makes feel important. I think it’s important to teach others about vitiligo so that people don’t make fun of them and so people don’t feel embarrassed about having vitiligo. I feel really happy and positive about my skin now. Don’t be afraid to show your patches. People might have questions about your patches and you can explain what it is and be proud!”
Meet Darnay, he is 10 years old and enjoys tennis, gaming and looking after his little sister…
“I developed vitiligo at the age of 7 and I’ve never been ashamed of my patches.
I think that my patches are really cool and resemble a superhero mask. People stare all the time, but it doesn’t bother me at all and it just gives me extra strength.
I say vitiligo shouldn’t change the way you are, it should give you more confidence. I think my vitiligo makes me unique.
Wear your parches with pride. Look in the mirror everyday and tell yourself you are beautiful. Hold your head up high. If people stare, let them stare. They are just fascinated with your uniqueness.”
Follow Darney’s journey on Instagram: @darns2012
Meet Lizzy, she’s 7 years old and was diagnosed wih vitiligo when she was 5…
“I would tell kids who get diagnosed with vitiligo not to be scared or worried. I told my friends that I have vitiligo and explained what it was just in case the saw one of my spots and worried about me.
I told them that vitiligo is on contagious and doesn’t hurt me at all.
I love the kids I’ve met through the Vitiligo Society. Vitiligo has helped me make new friends all over the world!”