Vitiligo is an autoimmune disorder that often changes over time. Patches of skin that lose melanin (the pigment that gives your skin color) may grow larger, or new patches may pop up. In some cases, affected areas may remain the same or even grow smaller.
Some members of MyVitiligoTeam have discussed seeing their condition progress. One member who was recently diagnosed shared, “This is something that is new to me and has been progressing rapidly. Sometimes it is difficult. … I cried some days because of my rapidly changing skin.”
Another member said their condition wasn’t changing as quickly. “My progression is really slow compared to a lot of people I’ve heard about,” they said.
Experts have developed several methods to measure the extent of a person’s vitiligo. This allows doctors and people living with vitiligo to track their progression over time. These methods may help you understand when your condition is getting worse or determine whether a new treatment, like a topical cream or phototherapy, is working. They are also used during clinical studies to measure the effectiveness of different treatment options.
You and your doctor can track signs of vitiligo and their progression with photos or questionnaires.
Dermatologists may take photos or ask you to take photos of skin affected by vitiligo to monitor progress. This can be an important way to keep track of vitiligo progression.
“I’ve been using ruxolitinib (Opzelura) for eight months now, and I’ve seen some improvements,” wrote one member of MyVitiligoTeam. “I will be going to the dermatologist to see how I've improved because they have all the before and after pictures.”
If you want to take your own photos so you can track progression for yourself, you may want to follow expert recommendations for taking pictures of vitiligo. Regularly taking the same types of pictures may help you create a consistent record of your condition and compare your vitiligo patches over time.
Your pictures will come out best if you don’t have anything distracting in the background. Experts say that black, green, or dark blue backgrounds will help your skin stand out better. However, any solid-colored background will work. Using a nonreflective background is also helpful, if possible.
Try to find a blank wall in your home, or hang up a piece of dark fabric and stand in front of it. Whichever background you choose, try to use the same one each time.
Your pictures will come out best if you have bright lights on either side of your body. However, this is probably not possible in most homes. Do your best to take your pictures near a bright light and position the light in the same spot each time you take a picture. This will help your skin look consistent from picture to picture.
It may also help to rely on artificial lights rather than sunlight to make sure the lighting level stays the same from photo to photo. Close any blinds on nearby windows to make sure the natural light doesn’t change the way your pictures look. You can also use the flash on your camera or phone. If you get pictures taken at your dermatologist’s office, they may also take some in the light of a Wood’s lamp — a lamp that uses ultraviolet light.
Try to stand in the same spot for every picture to minimize any differences in your background or lighting. You could place tape or a rug on the ground to make sure you remember where to stand.
When taking a picture of a patch of vitiligo, hold a ruler next to it. This can help you measure whether the spot is growing or shrinking over time.
Try to keep your camera or phone straight — it shouldn’t be tilted up or down. Taking a picture of the same area at different angles may make your skin look different, so it’s best to keep your phone facing directly at the skin being photographed.
Vitiligo experts also say that pictures will turn out best if your camera is about 3 to 5 feet away from you (between 1 and 1.5 meters).
You may want to make a list of all the areas of skin you want to photograph. Make sure to capture all sides of your body. Follow this list each time you take pictures to make sure you’re taking the same types of photos each time.
When saving your photos, you may want to put the date in the file name. Then, store all of your photos in the same spot. This will help you find all of your photos later and easily see when you took each picture.
Researchers have developed several questionnaires that can help assess the current state of a person’s vitiligo. By repeatedly taking these assessments over time, doctors and people living with vitiligo can get a clearer picture of how their condition is changing.
These questionnaires typically measure more obvious signs of vitiligo, such as areas of hypopigmentation or depigmentation (light or white patches) on the skin. However, some newer tools also look into the individual’s perception of their vitiligo. Vitiligo experts are increasingly considering the point of view of those who have the skin condition, along with the effects of vitiligo on self-esteem, mental health, and quality of life. You and your doctor should discuss all of these factors when making treatment decisions.
Some questionnaires are used in doctor’s offices or within clinical trials. These often measure areas of skin with depigmentation. These areas may increase over time as melanocytes (skin pigment cells) die. Treatments may lead to repigmentation of previously white areas, leading to larger areas of pigmented skin tone.
The Vitiligo Area Scoring Index (VASI) is one of the first vitiligo quizzes. Using the VASI, a doctor estimates the amount of depigmentation on five separate areas of the body. The doctor then combines these numbers to get a total score that represents the amount of the body affected by vitiligo. The five parts of the body are:
The VASI has been used to measure vitiligo in many studies. However, the results of this questionnaire aren’t always consistent and may change based on which doctor is conducting it. Therefore, researchers have tried to develop other tools that are more accurate.
One of these newer questionnaires is the Vitiligo Extent Score (VES). This tool is similar to the VASI — it involves dividing the body into areas and estimating how many white patches are present. However, the VES divides the body into 19 different regions. Studies show that the VES may provide more consistent results than the VASI.
Another tool used to measure the effects of vitiligo is the Vitiligo Noticeability Scale (VNS). This questionnaire is used to rate skin patches in clinical trials for the potential treatment of vitiligo. While many other questionnaires rely on doctors to assess skin patches, the VNS asks people with vitiligo to rate how “noticeable” they think other individuals’ patches are. The VNS has been used in clinical studies to help researchers understand what people with vitiligo consider to be a successful treatment.
Experts have also developed other vitiligo questionnaires. Your doctor may use a different system to track your progress. Additionally, if you take part in a clinical trial, the researchers may have their own ways of measuring progression.
Some researchers have developed tools that help people with vitiligo rate their own experience with the condition. This allows people living with the disease to provide input on how they see their vitiligo.
One of these questionnaires is the Self-Assessment Vitiligo Extent Score (SA-VES). This test works in the same way as the VES — the body is divided into different regions, and the amount of depigmentation is estimated. However, in the SA-VES, the person with vitiligo is the one filling out the questionnaire, rather than a doctor. Most people find this test easy to use, and the results of the SA-VES are usually very similar to the results seen in the VES.
Unfortunately, you can’t use the SA-VES completely on your own. If you are interested in trying the questionnaire, ask your health care provider to help you. Your dermatologist can give you a scoring sheet containing images with various levels of skin depigmentation. You can then compare these images to how your skin looks. This type of questionnaire may help you decide on a treatment plan along with your doctor.
If you’re interested in tracking your vitiligo progression and measuring the effects of your treatments, work with your dermatologist. Your doctor can help you understand which strategies might work best. They may be able to take photographs or complete questionnaires for you, and add them to your medical record.
MyVitiligoTeam is the social network and support group for people with vitiligo and their loved ones. On MyVitiligoTeam, members come together to ask questions, give advice, and share their stories with others who understand life with vitiligo.
Have you or your doctor tried to track your vitiligo progression? Have you used photos, questionnaires, or some other method? Share your experiences in the comments below, or start a conversation by posting on your Activities page.