Hiding in plain sight: the psychosocial burden of vitiligo and importance of clinical research


Imagine waking up one day with a white patch somewhere on your body. It’s not painful or itchy, but over time it grows and changes, with more patches appearing almost daily. In a short space of time, these patches have fundamentally altered the appearance of your skin and your interface with the world. This is the reality for over 1.5 million Americans living with vitiligo.

Vitiligo is an autoimmune condition that attacks pigment-producing cells, or melanocytes, leading to depigmentation in lesions across the body. The lesions are often very visible—such as on the face, hands, or arms—but they can occur anywhere and change rapidly. The impact of the loss of identity that accompanies depigmentation is profound. However, the widespread need to treat vitiligo patients is only just being recognized, and we still lack effective treatment options. Fortunately, we are making progress.

In a society often driven by aesthetics and identity, the impact of a visible loss of pigment caused by vitiligo is not difficult to understand. Some patients manage to defy the odds, and it is wonderful to see models with vitiligo embrace their uniqueness and be championed for it. Yet vitiligo has severe psychosocial consequences for many patients—children and adolescents are frequently teased and ridiculed by their peers, excluded from society, while adults experience poor mental health and job discrimination.

In my years treating and counseling vitiligo patients, I have witnessed first-hand the impact of this psychologically devastating condition and how this is compounded by the lack of consistently effective treatments. Camouflage can ultimately do more harm than good: the burden of constant concealment eventually erodes self-esteem, leading to a diminished quality of life and significantly impacting mental health. Tools in our clinical arsenal are often slow, burdensome, or ineffective, and there is no surefire way to know what will work for patients.

The foundation to treating vitiligo is a three-pronged approach: stabilization, repigmentation, and maintenance. You need to arrest the pigment loss, repigment the affected skin, and ensure that patients don’t relapse. Clinically, it is also important to manage patients’ expectations—understanding what success looks like, while counseling that even the most promising therapies may not work for them, and success (if it comes) may require many months of treatment. Ultimately, this leads to an approach of escalation, combination, and personalization, trying to balance the patients’ desires with clinical realities.

Historically, vitiligo has been a therapeutically challenging disease to tackle in the clinic. The good news is that we seem to be entering a new chapter in vitiligo research and treatment. In the last decade, we have made exciting advances in the field, effectively translating research into approved and emerging therapies for patients. We now have the first approved pharmaceutical therapy, and a range of clinical trials are ongoing.

Clinical research is vital to broadening the clinical arsenal we possess, often by translating the use of already FDA-approved drugs. Treatments such as JAK inhibitors and afamelanotide (an alpha-MSH analogue) show promise for certain patient groups, aiming to address one or more of the three prongs necessary.

Vitiligo can be a devastating disease, but the future for vitiligo treatments looks promising. I encourage health care professionals to speak to vitiligo patients about clinical trial enrollment to help improve the treatments we can offer and help patients restore their identity.

Pearl Grimes is a dermatologist.


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