Any loss of hair can be scary, but losing it all can feel like a nightmare.
Alopecia totalis involves the total loss of scalp hair. It’s a rare condition without a whole lot of solid research to understand its origins and potential cures.
For men suffering from hair loss they suspect to be alopecia totalis, it’s helpful to understand how to identify and potentially treat it.
Learning about your hair loss can be empowering, but seeking medical help for it is the best way to know for certain what’s causing the loss of hair and how best to approach remedying it.
Alopecia totalis is a form of alopecia areata, which is one of several types of hair loss. Where alopecia areata results in bald patches on the scalp, alopecia totalis, also referred to as AT, results in total hair loss.
Sometimes people with alopecia totalis start the balding process by losing patches of hair, while other times the hair loss happens so rapidly that patches aren’t seen.
One estimate suggests the most common situation seen when an alopecia totalis patient first presents to a doctor is five or more patches, or what’s known as multifocal alopecia areata.
Unlike with alopecia universalis, where hair loss includes the entire body, people with alopecia totalis generally maintain hair at their eyebrows, eyelashes, pubic area, and elsewhere across the body.
Alopecia totalis is considered a rare disease. In fact, there is a two percent lifetime risk of you developing alopecia areata, and alopecia totalis is even less common — it affects 0.03 percent of the population.
It isn’t entirely clear what causes alopecia totalis. However, it’s believed to have an autoimmune connection, where your body’s own immune system attacks the hair follicles as if they are an invader (such as a virus).
In fact, immune cells known as NKG2D+ T cells (a type of T cells) gather around the hair follicles in alopecia areata, attack them, and stop them from producing more hair.
There may be a genetic component to alopecia totalis, too.
Approximately 20 percent of people with alopecia totalis have a family member with alopecia. And, in twin studies, identical twins with alopecia totalis report their twin also having the disease 50 percent of the time.
The immune response that causes alopecia totalis may come on spontaneously, or can be triggered by an environmental event such as a virus.
Hair loss is the primary symptom of AT, and as said before, it may begin as patchy hair loss that ultimately spreads across the scalp.
Some patients don’t seek a doctor’s help until they’re completely bald. But as alopecia totalis only affects the scalp, they still have their eyebrows, eyelashes, and other body hair.
Follicles are still visible in people with alopecia totalis, unlike in scarring alopecia, which is another form of hair loss.
Near the bald spots, what is known as exclamation hairs may be present. These hairs are thicker at the base and thin towards the ends.
Another sign of alopecia totalis is nail pitting. Nail involvement is seen in an estimated 20 percent of alopecia totalis cases, and may include pitting, brittle nails, trachyonychia or ridging, and onycholysis or the separation of the nails from the nail bed.
There is no one single slam-dunk alopecia totalis cure. But there are some treatment approaches that may help.
A healthcare professional can help you determine the best course of treatment to pursue, with the knowledge that you may need to try a few things before you find what works.
Rarely — less than 10 percent of the time — people experience spontaneous recovery from alopecia totalis. In fact, only 8.5 percent of cases experience long-term recovery at all.
Because long-term recovery occurs in less than 10 percent, realistic expectations are important.
A 2008 review in the journal Cochrane Database of Systemic Reviews found no significantly beneficial treatment for alopecia areata or alopecia totalis. The review was edited in 2020, and the editors found “no change” to add to the conclusions.
Seventeen trials involving 540 participants were included in the review, which looked at topical and oral treatments, including corticosteroids, photodynamic therapy, and minoxidil, among other things. The researchers concluded there were no treatments that showed a significant benefit when compared to a placebo.
Though recovery from alopecia totalis is uncommon, your healthcare provider may suggest trying some of the following treatments: topical immunotherapy, immunosuppressive agents, systemic steroids, adn phototherapy.
Generally, topical steroids are the first line of treatment against alopecia totalis. Topical immunotherapy is an early treatment approach, too, but may result in itching and irritation. Systemic steroids, taken orally or by injection, may also be used to stimulate hair growth.
If none of the above are effective, your healthcare provider may suggest immunosuppressive agents or janus kinase (JAK) inhibitors.
JAK inhibitors are a fairly new form of treatment being researched for their use in alopecia areata, and include medications such as tofacitinib, ruxolitinib, and baricitinib.
Again, the outlook is often bleak for patients with AT — 23 percent do not respond at all to any therapy.
Whether you’re waiting to find out if your prescribed treatment works, or if you’ve pursued all possible approaches, a wig or hair replacement system may provide some comfort.
Alopecia totalis is a rare form of alopecia areata, hair loss that is believed to be an autoimmune condition. It causes you to lose all of the hair on your scalp.
There are various treatment approaches that can be pursued by you and your healthcare provider, but AT may not be treatable in many cases.