I clearly remember when I first suspected my son had vitiligo. It was just before his second birthday and I saw one spot appear on his chest. At first I wondered if it was fungal but less than a month later his neck had pretty much fully depigmented. At first, I did absolutely nothing. Looking back, I was in a state of denial and shock. No one in neither mine nor my husband’s family have vitiligo. My only knowledge of vitiligo was that Michael Jackson had it. I had no experience in understanding how it would make my son feel or how I might feel long term.
When the initial shock wore off, I realised I needed to do something. My son was scheduled to be seen by the GP for a completely unrelated matter and I decided to ask about his skin whilst I was there. I wasn’t prepared, I had no pre-planned questions and no expectations as to what the conversation might be. I was still pretty lost. Whilst there, I showed the GP his neck and the response was…yes that is vitiligo. On hearing the words, I instantly wanted to know if he would grow out of it, so I asked. The response was ‘maybe, although it’s highly unpredictable’. So I walked away feeling more lost and confused than when I walked in.
What followed next was months of fighting and struggling to get my son seen by a dermatologist. Where I lived, there was a shortage of dermatologists (even pre Covid) and I was told (in no uncertain terms) that if it’s not cancer, he wouldn’t be seen which was very frustrating. I was eventually successful in getting him to a dermatologist (unfortunately it required me taking him privately and then getting referred by the private dermatologist to see the NHS one). My son is now under the treatment of a team of dermatologists and so I’d like to share some of things I experienced as part of getting him diagnosed.
Preparing to see your GP
If you suspect your child has vitiligo, the first step is to see a GP to get an official diagnosis. Depending on the age of your child, you may want to explain beforehand that this first appointment is to confirm the diagnosis and get as much information as possible. Asking questions around treatment can sometimes make the child feel that you may think something is wrong with them.
Before going, I recommend writing down all the questions you want to ask as it can be overwhelming when you are sitting opposite your GP trying to digest the diagnosis. If your child is old enough, you may want to work on the list together to make sure all of their concerns are addressed as well. Unfortunately, not all GP’s are forthcoming with information, which is why you want to be prepared as much as possible.
Here are some questions you might want to ask:
- What are the possible causes of vitiligo?
- Do I need to look out for any other symptoms related to Vitiligo?
- Does my child need to take any tests to confirm the diagnosis?
- Is this condition temporary or long term?
- Can my child be susceptible to any other conditions because of their vitiligo?
- What treatments are available, and which do you recommend?
- What are the possible side effects of the treatment options?
- How long would the treatment need to be taken for and how frequently?
- Are there alternatives to the primary approach you are suggesting?
- Are there any restrictions that I need to consider for my child (for example, avoiding the sun at certain times)?
- Can you recommend camouflage or self-tanning products?
- Are there any brochures or other printed material that I can take home? What web sites do you recommend?
Don’t hesitate to ask additional questions during your appointment if you feel like you don’t understand. Every question you have, during which might be a difficult period, is valid.
What to do after diagnosis
Once the diagnosis has been confirmed, take some time to talk to your child about vitiligo. Depending on their age, it would be good to have the conversation with them about whether or not they would like to seek treatment. It is a balance between exploring treatment options whilst not applying pressure so they feel their skin is something that needs to be ‘fixed’.
If the decision is made to move forward with treatment, the most common treatment for children is a mixture of steroids and protopic topical treatments. It is good to be prepared to ask about the side effects as well as length of treatment and safe uses and applications. If your child has other skin conditions (such as eczema) remember to ask about the order of application of the creams so that it doesn’t interfere.
Until recently, Vitiligo was considered a rare disease and therefore there are many people that don’t know about it or don’t understand. A lot of teachers, students and other parents may have no experience at all with Vitiligo. Therefore, it may be good to talk to their teachers and the school to help educate the class and other students about Vitiligo. Letting people know that it is not painful, and it is not catching can make a big difference in your child’s experience in their school. Other students may simply be curious and ask questions, but this may make the child with vitiligo feel self-conscious or singled out. So, initiating the conversation and being open may eliminate some potentially negative situations for your child. Of course, your child must be comfortable with this approach before you do it.
Ultimately if your child is diagnosed with vitiligo, the most important thing is to support them. Educate them on what that means and give them the confidence to respond if people ask questions or stare. Remind them that they are beautiful, unique, and special just the way they are. Their skin is just one aspect of what makes them, and it doesn’t define them.
Also, know that as a parent you are not alone. There is a global vitiligo community there to support you.
If you would like to gain further support and connect with parents who have children with vitiligo, you can join our Parent Support Network Facebook group: https://www.facebook.com/groups/245356819789785