How One Woman Champions Her Vitiligo Care – and Advocates for Other Patients

This article is sponsored by Incyte. Lisa was compensated for her time participating in the interview.

For Lisa, life with nonsegmental vitiligo has been a roller coaster of emotions. Navigating the condition meant becoming accustomed to constant change, as vitiligo — a chronic immune condition that causes depigmentation, or white patches, on the face and body — is a very visible disease and the process of depigmentation can be unpredictable. As Lisa struggled with her own journey of self-acceptance, she also faced harsh reactions to her skin from those around her, from obvious stares to rude remarks.

Now, more than 25 years into her journey, Lisa reflects on how she’s managed the challenges of living with vitiligo, what it was like to find a treatment that worked for her, and her role as an advocate for herself and other people with the condition.

SheKnows: When did you first notice the depigmentation of vitiligo, and how has it impacted your life?

Lisa: In my twenties, I began to notice a few white spots on my hands, which eventually progressed to my arms, elbows, feet, and knees. At first, I thought it must have been a reaction to something I had touched. It never crossed my mind that it could be permanent. When I was later diagnosed with nonsegmental vitiligo, I felt an overwhelming sense of panic. I didn’t know how I was going to live with this condition that had no cure.

As the depigmentation spread, I grew nervous about going out in public. Even during the hottest days of summer in Texas, I wore long sleeves to cover my body so people couldn’t see my skin. I had to push myself some days to get out of bed. I tried to stay positive, but I often felt like a prisoner in my own skin.

It wasn’t until the first time that I saw someone else with vitiligo in person that my perception changed. This stranger didn’t seem to have a care in the world about his spots. He seemed so comfortable, even around other people. I wanted to walk through rooms and experience the world like that, too.

Now, I can look back and appreciate how far I’ve come, in adjusting to change, understanding my vitiligo, and using what I’ve learned to raise awareness and help others.

SheKnows: How do you manage your nonsegmental vitiligo?

Lisa: I see a dermatologist regularly to check my skin, track my pigmentation, and oversee my treatment. To help repigment my skin, I use Opzelura^® (ruxolitinib) cream 1.5%. After a few months of using it consistently twice daily, I started seeing repigmentation, especially on my face. Now, nearly a year into treatment, I’ve seen about 80% repigmentation on my face. I’m hoping to see more repigmentation on other parts of my body that are also affected by vitiligo. I know this process takes time and is different for everyone, but I make sure to stay consistent with using my treatment as prescribed to see the best results.

Reporter’s note: Individual results may vary. The most common side effects of Opzelura in clinical trials were application site acne, application site pruritus, nasopharyngitis (common cold), headache, urinary tract infection, application site erythema, and pyrexia. Opzelura has warnings for risks that include serious infections, increased risk of death, cancer and immune system problems, increased risk of major cardiovascular events, and blood clots. In clinical trials, after 6 months with Opzelura: 30% saw at least 75% improvement to vitiligo on the face vs 13% using placebo, and 23% saw at least a 50% improvement to total vitiligo areas vs 8% using placebo. Opzelura is for use on the skin only. Do not use in your eyes, mouth, or vagina.

SheKnows: Why did you become a vitiligo advocate, and what do you do to advocate for the community?

Lisa: I became an advocate to help other people with vitiligo, and I focus on raising awareness of the condition and working to erase the stigma and misperceptions often associated with it. By sharing my story, my goal is to educate and help others with vitiligo find hope for their own journeys.

I’m a longtime member of a vitiligo patient advocacy group called VITFriends, and I’ve been an advocate since 2018. I’ve participated in library events, health and wellness fairs, and presentations on vitiligo and had the opportunity to share my vitiligo journey in two local news publications. In January 2023, with the help of VITFriends, I launched a vitiligo support group in my community, where we meet for lunch several times a year. We are looking forward to more events in 2025, such as fundraisers to spread awareness, school events, and a trip to Tampa, Florida, for the World Vitiligo Day conference.

I also use social media and create my own videos. I’ve found that this is a wonderful way to share my story, educate people, and raise awareness of vitiligo.

SheKnows: What do you wish more people knew about vitiligo?

Lisa: I want people to know that vitiligo is not contagious. Also, please remember to be kind. We are often bullied or overlooked because we look different. The stigma of vitiligo must be erased, and it takes all of us to do that.

SheKnows: What advice would you give to other people with vitiligo?

Lisa: My advice is to take your time, be patient with yourself, ask questions, and work closely with your dermatologist to help you manage your vitiligo. Remember that even on the hard days, you are not alone and there is support. Living with vitiligo is challenging, but I’ve learned that it doesn’t have to define you or hold you back. I’m living proof that someone with vitiligo can have an abundant life and thrive.

For more information, visit Opzelura.com/vitiligo.

INDICATION AND USAGE

OPZELURA is a prescription medicine used on the skin (topical) for the treatment of a type of vitiligo called nonsegmental vitiligo in adults and children 12 years of age and older.

The use of OPZELURA along with therapeutic biologics, other JAK inhibitors, or strong immunosuppressants such as azathioprine or cyclosporine is not recommended.

It is not known if OPZELURA is safe and effective in children less than 12 years of age with nonsegmental vitiligo.

IMPORTANT SAFETY INFORMATION

OPZELURA is for use on the skin only. Do not use OPZELURA in your eyes, mouth, or vagina.

OPZELURA may cause serious side effects, including:

Serious Infections: OPZELURA contains ruxolitinib. Ruxolitinib belongs to a class of medicines called Janus kinase (JAK) inhibitors. JAK inhibitors are medicines that affect your immune system. JAK inhibitors can lower the ability of your immune system to fight infections. Some people have had serious infections while taking JAK inhibitors by mouth, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have been hospitalized or died from these infections. Some people have had serious infections of their lungs while taking OPZELURA. Your healthcare provider should watch you closely for signs and symptoms of TB during treatment with OPZELURA.

OPZELURA should not be used in people with an active, serious infection, including localized infections. You should not start using OPZELURA if you have any kind of infection unless your healthcare provider tells you it is okay. You may be at a higher risk of developing shingles (herpes zoster) while using OPZELURA.

Increased risk of death due to any reason (all causes): Increased risk of death has happened in people 50 years of age and older who have at least 1 heart disease (cardiovascular) risk factor and are taking a medicine in the class of medicines called JAK inhibitors by mouth.

Cancer and immune system problems: OPZELURA may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers have happened in people taking a medicine in the class of medicines called JAK inhibitors by mouth. People taking JAK inhibitors by mouth have a higher risk of certain cancers including lymphoma and lung cancer, especially if they are a current or past smoker. Some people have had skin cancers while using OPZELURA. Your healthcare provider will regularly check your skin during your treatment with OPZELURA. Limit the amount of time you spend in the sunlight. Wear protective clothing when you are in the sun and use a broad-spectrum sunscreen. 

Increased risk of major cardiovascular events: Increased risk of major cardiovascular events such as heart attack, stroke, or death have happened in people 50 years of age and older who have at least 1 heart disease (cardiovascular) risk factor and taking a medicine in the class of medicines called JAK inhibitors by mouth, especially in current or past smokers.

Blood clots: Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) can happen in some people taking OPZELURA. This may be life-threatening. Blood clots in the vein of the legs (deep vein thrombosis, DVT) and lungs (pulmonary embolism, PE) have happened more often in people who are 50 years of age and older and with at least 1 heart disease (cardiovascular) risk factor taking a medicine in the class of medicines called JAK inhibitors by mouth.

Low blood cell counts: OPZELURA may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia), and low white blood cell counts (neutropenia). If needed, your healthcare provider will do a blood test to check your blood cell counts during your treatment with OPZELURA and may stop your treatment if signs or symptoms of low blood cell counts happen.

Cholesterol increases: Cholesterol increase has happened in people when ruxolitinib is taken by mouth. Tell your healthcare provider if you have high cholesterol or triglycerides.

Before starting OPZELURA, tell your healthcare provider if you:

•have an infection, are being treated for one, or have had an infection that does not go away or keeps coming back

•have diabetes, chronic lung disease, HIV, or a weak immune system

•have TB or have been in close contact with someone with TB

•have had shingles (herpes zoster)

•have or have had hepatitis B or C

•live, have lived in, or have traveled to certain parts of the country (such as the Ohio and Mississippi River valleys and the Southwest) where there is an increased chance for getting certain kinds of fungal infections. These infections may happen or become more severe if you use OPZELURA. Ask your healthcare provider if you do not know if you have lived in an area where these infections are common.

•think you have an infection or have symptoms of an infection such as: fever, sweating, or chills, muscle aches, cough or shortness of breath, blood in your phlegm, weight loss, warm, red, or painful skin or sores on your body, diarrhea or stomach pain, burning when you urinate or urinating more often than usual, feeling very tired.

•have ever had any type of cancer, or are a current or past smoker

•have had a heart attack, other heart problems, or a stroke

•have had blood clots in the veins of your legs or lungs in the past

•have high cholesterol or triglycerides

•have or have had low white or red blood cell counts

•are pregnant or plan to become pregnant. It is not known if OPZELURA will harm your unborn baby. There is a pregnancy exposure registry for individuals who use OPZELURA during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. If you become exposed to OPZELURA during pregnancy, you and your healthcare provider should report exposure to Incyte Corporation at 1-855-463-3463 or www.opzelura.pregnancy.incyte.com.

•are breastfeeding or plan to breastfeed. It is not known if OPZELURA passes into your breast milk. Do not breastfeed during treatment with OPZELURA and for about 4 weeks after the last dose.

After starting OPZELURA:

•Call your healthcare provider right away if you have any symptoms of an infection. OPZELURA can make you more likely to get infections or make worse any infections that you have.

•Get emergency help right away if you have any symptoms of a heart attack or stroke while using OPZELURA, including:

•Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with OPZELURA, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, or shortness of breath or difficulty breathing.

•Tell your healthcare provider right away if you develop or have worsening of any symptoms of low blood cell counts, such as: unusual bleeding, bruising, tiredness, shortness of breath, or fever.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

The most common side effects of OPZELURA in people treated for nonsegmental vitiligo include: acne at the application site, itching at the application site, common cold (nasopharyngitis), headache, urinary tract infection, redness at the application site, and fever.

These are not all of the possible side effects of OPZELURA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Incyte Corporation at 1-855-463-3463.

Please see the Full Prescribing Information, including Boxed Warning, and Medication Guide for OPZELURA.

OPZELURA, Incyte, and the Incyte logo are registered trademarks of Incyte.

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