Dermatologists often describe vitiligo by its location and how widespread it is. If multiple parts of the body are affected, vitiligo is considered “generalized.” Universal or complete vitiligo are the terms for full-body vitiligo that covers approximately 80 percent of the body or more.

Although vitiligo changes your appearance, it is not a dangerous health condition — although your skin may be more susceptible to sun damage. It’s essential to be mindful of the potential risks of any treatment option before moving forward to address vitiligo. In cases where most of the skin has been affected, the goal of treatment may shift from reverting back to your original skin tone to simply lightening the remaining pigmented skin cells. This article discusses different avenues to consider after a full-body vitiligo diagnosis.

Diagnosing Full-Body Vitiligo

To be diagnosed with full-body vitiligo, your dermatologist may run a series of tests, such as a blood test or a skin biopsy on the affected areas. After discussing your medical history, reviewing your family history, and ruling out other potential causes of discoloration (such as albinism, eczema, psoriasis, or other skin conditions), your dermatologist will assess the extent of vitiligo on different parts of your body.

Full-body vitiligo usually takes time to develop, so you may have a history of being misdiagnosed or trying other treatments in the past that weren’t effective. Once vitiligo has covered large areas of your body, certain therapies are typically more appropriate than others.

Vitiligo Treatments To Avoid

Many of the treatments for small areas of vitiligo may not be safe for large areas. For instance, steroid creams are typically only recommended for vitiligo that affects less than 10 percent of the body because these medications can adversely affect your health. Similarly, oral steroids are sometimes prescribed to slow down rapidly spreading vitiligo, but they may not be helpful when the skin is already mostly covered. A new class of medicines (JAK inhibitors) is being studied as a potential topical and oral therapy for vitiligo.

Skin grafting is a treatment option for segmented areas of stable vitiligo but not for people with complete vitiligo. Instead of trying to bring back your original skin pigment, your doctor may suggest targeting the spots of unaffected areas instead. Weighing the potential risks and benefits of vitiligo treatment becomes that much more critical when treating large areas of skin as opposed to isolated white patches.

Preferred Treatments for Universal Vitiligo

There are several ways people with full-body vitiligo can work on evening out their skin tone.

Phototherapy

Phototherapy, or light therapy, uses a medical-grade sunlamp to deliver ultraviolet (UV) rays to treat vitiligo-affected skin. Phototherapy can cover a large area in a short time with low risk to your general health. Sometimes, a medication called psoralen is prescribed to increase your skin’s sensitivity to phototherapy. Be sure use phototherapy under the care of a dermatologist who is monitoring the amount of UV light to which you are being exposed. UVB is more commonly used.

Depigmentation

Some people with full-body vitiligo decide to focus on lightening the remaining pigmented skin areas instead of darkening the white patches. A process called depigmentation involves bleaching darker skin using solutions with a chemical called hydroquinone. Depigmentation is typically reserved for people with vitiligo on at least 50 percent of their body or in highly visible areas such as the face or hands. It may take 1 to 4 years to complete the process of depigmenting your skin.

Monobenzyl ether of hydroquinone (MBEH) is an ointment approved by the United States Food and Drug Administration (FDA) to treat vitiligo through depigmentation. However, FDA approval doesn’t mean MBEH is without risk. Some people experience allergic reactions, swelling, skin irritation, or other side effects from MBEH. This depigmentation is permanent, can be expensive, and leaves the skin vulnerable to sun damage and skin cancer. In addition, MBEH hasn’t been approved for use in women who are pregnant or breastfeeding or in children younger than age 12. In some cases, another form of hydroquinone, called monomethyl ether of hydroquinone, is better tolerated.

Other depigmentation methods include topical application of a phenol solution by a health care provider, cryotherapy (liquid nitrogen), or laser treatments. Talk to your provider to learn more about the pros and cons of different types of depigmentation.

Choosing Not To Treat Vitiligo

If you’re concerned about the cost, side effects, or time it takes to treat vitiligo, you may decide to forgo treatment altogether. There’s no rule that you have to stop the spread of vitiligo or cover it up. Choosing not to treat vitiligo is a perfectly acceptable option.

When you have full-body vitiligo, you may find that declining treatment is the easiest way to deal with it. Focusing your efforts on educating others around you about vitiligo and getting checked for potentially related conditions (including thyroid disease, type 1 diabetes, or other autoimmune disorders) are also positive responses to full-body vitiligo.

Living With Full-Body Vitiligo

People who have vitiligo covering the majority of their skin can’t conceal it like people with small patches may be able to. Because pale skin is more vulnerable to sunburns, as is skin treated with phototherapy or hydroquinone, using sunscreen, protective clothing, and getting regular skin cancer checks can help you stay healthy with vitiligo.

Vitiligo that affects the whole body doesn’t just affect your appearance but can also change your self-perception and the way others see you. Some people have described appearing as a different race because of significant skin color changes from universal vitiligo. Furthermore, vitiligo on your scalp can produce white or gray hair, regardless of your age. If you look noticeably different from your younger self or your relatives, you may wonder how these physical changes will affect your life.

Self-acceptance is vital for people with any type of vitiligo. Connecting with others on sites like MyVitiligoTeam can help you make peace with (and appreciate) the uniqueness of your appearance. One member commented, “Since joining this group, I’m no longer self-conscious about my vitiligo. My self-esteem has improved tremendously.”

Along with connecting to others with vitiligo, you should talk to your doctor if you begin to feel depressed or anxious about your skin. Vitiligo may change how you look, but it shouldn’t affect your ability to work or enjoy a fulfilling social life. Seek support groups or counseling from a licensed mental health professional if you feel vitiligo is holding you back from living your best life.

Talk With Others Who Understand

MyVitiligoTeam is the social network for people with vitiligo. More than 9,000 members come together to ask questions, give advice, and share their stories with others who understand life with vitiligo.

Are you living with full-body vitiligo? What kind of treatments have you tried, if any, and how has it affected your life? Share your experience in the comments below, or start a conversation by posting on MyVitiligoTeam.