When people hear the term “hair loss,” they often think of the hair on the top of the head. But people who have a condition called alopecia universalis lose all their hair, not just hair on the head.
The word alopecia means hair loss. A person with alopecia universalis loses all their hair, including eyebrows and eyelashes, facial hair, body hair, and hair on the head.
But, new treatments may be effective in helping some people regrow hair. Those dealing with hair loss may find mental and emotional support to be particularly helpful in improving quality of life.
Fast facts on alopecia universalis:
- There is currently no cure for alopecia universalis.
- Alopecia universalis is not contagious.
- Alopecia universalis does not permanently damage the hair follicles.
Alopecia universalis is thought to be an advanced form of another condition known as alopecia areata.
Researchers think that alopecia universalis is an immune system disorder, where the body’s immune system mistakenly attacks the hair follicles.
This attack makes the hair fall out.
However, the immune system may not be the only cause of alopecia universalis. The National Alopecia Areata Foundation say alopecia areata can run in families. But, unlike many inherited conditions, both parents must contribute specific genes to pass alopecia areata on to their children.
This is known as a polygenic disease, which means “multiple genes.” Because it requires genes from both parents, many people with any form of alopecia areata, including alopecia universalis, will not pass the condition to their children.
The environment may also play a role. Identical twins only get alopecia areata together about half of the time, according to a report in the Journal of the American Academy of Dermatology.
This suggests that environment, combined with genetics and the immune system, could ultimately trigger the hair loss. This environmental trigger remains unknown and could be an illness, allergy, hormones, toxins — or any combination of these.
Does stress cause alopecia universalis?
Alopecia universalis has not been proven to be related to stress. It is possible that extreme stress, combined with genetics and immune system problems, could trigger alopecia areata and universalis. No medical studies have proven this link, however.
Hair loss caused by stress is known as telogen effluvium. This type of hair loss is temporary and not related to immune or genetic factors. Usually, telogen effluvium is caused by physical or mental stress, such as severe illness, surgery, childbirth, emotionally stressful events, extreme diets, and medications.
The hair loss occurs several months after the stressful event and often resolves itself within a few months. Telogen effluvium is not related to alopecia universalis.
Alopecia universalis may start as alopecia areata, affecting just one or two small patches of hair.
The hair loss can happen very suddenly, producing bald spots in a matter of days. As it progresses to alopecia universalis, hair loss will continue to spread until there is no hair left on the head or body.
The total hair loss that occurs with alopecia universalis usually has no other symptoms.
Alopecia universalis may be diagnosed with a physical exam and other medical tests. A healthcare professional or dermatologist may be able to diagnose the condition with a medical history and by checking for loss of hair throughout the body.
Sometimes a doctor will recommend a biopsy to confirm the disease and to check for other skin conditions. They may also order blood tests to look for other health problems.
The National Institutes of Health (NIH) say no therapy has been found to cure this condition. The treatment chosen often depends upon a person’s age, medical history, and severity of their hair loss.
Though there is no reliable treatment, some medications that may work include:
- Diphenylcyclopropenone: A topical drug that has been successful in treating alopecia areata in some people.
- Squaric acid dibutylester: This is also used to treat alopecia areata.
- Steroids: These help calm down the immune response and inflammation.
- Cyclosporine: An immunosuppressive drug, in combination with a steroid called methylprednisolone.
Emerging treatment options
Some new treatments for alopecia universalis and its related disorders may be on the horizon.
The following studies offer hope for hair regrowth, though none have yet been shown to be effective in clinical trials:
- One man experienced a total regrowth of his hair after he was treated with a psoriasis drug known as tofacitinib citrate, according to a report in the Journal of Investigative Dermatology. The discovery was made by accident, as the man was using the drug to treat psoriasis, not his alopecia. After 8 months of treatment, he once again had a full head of hair.
- A report in the Journal of the American Medical Association states that a female teenager with alopecia universalis had success with a topical medication called Ruxolitinib. This medicine is most commonly used to treat a bone marrow disorder. After several months of applying the medication to her eyebrow area, the female experienced significant hair regrowth of her eyebrows.
- A topical medicine that contains natural herbal ingredients showed promise for some hair regrowth, according to an analysis in Hair Therapy and Transplantation.
When a person has alopecia universalis, their hair follicles are still alive and able to regrow hair. In fact, some people may find that the condition goes away on its own after a few months or years.
But in some cases, a person may experience permanent hair loss. Experts are not sure why some people experience success with treatment or a spontaneous recovery while others do not.
Some people experience emotional and mental health issues after losing their hair. Some people find that a wig or hairpiece helps them feel better about their appearance.
Others may choose not to use wigs. Whatever a person’s preference, sun protection is important.
Using sun-protective head coverings, scarves, and hats is recommended for everyone and is especially important for those without hair on their heads.
Support groups may be helpful to help people cope with hair loss. The National Alopecia Areata Foundation says nearly 150 million people worldwide have some form of alopecia areata. And, about 1 in 4,000 people in the world has alopecia universalis.
People with alopecia universalis may find that online or in-person support groups are a valuable resource with which they can share their alopecia experience.
A cure has yet to be found, but new possibilities for treatment may offer hope for those with alopecia universalis. Recent statistics show that only 10 percent of people with alopecia universalis will experience a full recovery, so connecting with others through support groups is a valuable part of living with the condition.
Alopecia universalis does not pose any threat to a person’s physical health, but emotional health may be affected. Exploring support groups, clinical trials for new treatments, and organizations for those with hair loss may be helpful.