A diagnosis of vitiligo is a significant moment in an individual’s journey, and the experiences surrounding it can vary considerably. While the majority of people first learn about vitiligo through a GP or healthcare professional, their overall experience with the diagnosis is often not reassuring or positive. Patients describe feeling uninformed, unsupported, unheard, distrustful, and/or pessimistic when receiving the diagnosis. Similarly, other feelings such as neglect, confusion, dismissal, and fear were experienced to a lesser extent. It’s very common for individuals to turn to a GP as their initial source of help and information, however the information received during this stage is often perceived as not useful.

One prevalent issue is that people often feel dismissed and are being told that it is only a ‘cosmetic condition’, which can be invalidating and frustrating. The possible psychological impact is not mentioned or addressed by medical professionals and many vitiligo patients are not referred to a dermatologist or a specialist that could provide more information in relation to all aspects of the condition. In fact, only 4% of surveyed participants said that their diagnosis helped them to feel seen and heard by healthcare professionals.

It is becoming more and more common for people to ask us about finding a private healthcare specialist to support their vitiligo diagnosis and treatment journey. Your best chance for a positive treatment outcome is to find a dermatologist who specialises in treating this complex disease and whilst we cannot recommend individuals we can suggest some considerations that might help you identify the right specialist for you.

To make the most of any healthcare appointment it’s best to educate yourself about vitiligo and the treatments available. So before you give up on your healthcare provide think to yourself – ‘what could I have armed myself with to make that go better?’. Ideally you should go into any appointment with a clear plan of what you would like to discuss and what outcomes you would like: Are you most concerned about the vitiligo on your face or hands? Are you afraid that your vitiligo is spreading rapidly? Would you like to try a particular type of treatment? Be polite but firm about your priorities and the result you would like, but also understand that not all treatments will be suitable for everyone, and outcomes vary dramatically between patients too. We have lots of information about what your GP can do for you here: https://vitiligosociety.org/how-your-gp-can-help/

We always recommend starting with your NHS GP and making sure that you’ve made the most of this service. You NHS GP should be able to help you:

It’s important to note that there are lots of new pipeline treatments being researched now, so it’s always worth starting with your NHS GP to see if anything new is available – even if historically your appointment have not felt positive or helpful. You can read up on what treatments are available here: https://vitiligosociety.org/vitiligo-treatments/

There are several ways in which you may consider finding a specialist dermatologist:

Checks to make before you book

If you are choosing an NHS dermatologist then you can ask the below questions still, but you may be limited in terms of your options – but it’s good to ask if your GP can refer you to a specialist, The Vitiligo Clinical And Research Centre (Vitiligo CARE), for instance, at the time of writing this, take referrals from out of the area (Midlands). If you choose to pay for a private appointment then this can be a very costly route, so it’s important to do your best to ensure that your chosen or recommended dermatologist is going to be able to help you. We would suggest considering the following questions before booking with them:

The treatment journey for individuals living with vitiligo is a diverse and constantly developing process. People often describe their treatment journey as sort of a ‘trial-and-error’ process, while exploring different treatment options.

The process of treatment can vary significantly depending on the type of vitiligo, location and colour of the patches, the extent of their vitiligo, as well as individual preferences, goals and needs. For instance, some individuals opt for treatments focused on repigmentation, aiming to restore the colour of the depigmented areas, and may explore options like topical corticosteroids, phototherapy, or advanced therapies such as an excimer laser or microskin. Remember what works for some might not work for you and treatment outcomes may take time to become evident. Finding the right treatment, trusting it, and using it constantly can be emotionally challenging, time consuming, expensive, and sometimes difficult to access.

Once you start down a treatment route remember it’s not the only support option available to you. There are camouflage services which can help you cover your vitiligo, counselling service, and peer support services. Tap into as many options as you can early on in the treatment process to help build your resilience and support network. Remember, if you struggle at all throughout your diagnosis or treatment journey then please reach out to us so we can link you in with support services, and answer any questions you might have.

Our charity is asked on a weekly basis to recommend healthcare practitioners, and it’s something that we cannot do. What we can do is facilitate community members to share their experiences – good and bad. Take time to journal your experience and, if you feel able, share it with us so that it can support other people who may be in the position you are in now.