People with alopecia totalis lose all of the hair from their scalp. It is a rare autoimmune disease, in which genetics plays a role. It is an advanced form of the hair-loss condition alopecia areata.
Not everyone with alopecia areata will go on to develop alopecia totalis (AT). It is an unpredictable disease that has no cure, though sometimes, it can resolve itself.
Fast facts on alopecia totalis:
- Other than the absence of hair, there are usually no other visible symptoms.
- The exact cause of AT is unknown.
- There is currently no cure for alopecia.
Some people with the condition will have scalp discomfort, such as soreness, itching, or tingling sensations. Many compare this to having a ponytail that has been tied too tight.
Though the cause is unknown, AT is thought to be an autoimmune condition — meaning it is caused by a faulty immune system. Researchers believe that the immune system mistakenly identifies hair follicles as a threat and attacks them.
In the past, the condition has been linked to stress, yet there is little evidence to support this.
Around 20 percent of people with AT have a family member who has alopecia. This suggests there may be genetic factors at play in the development of the condition.
Scientists believe having specific genes will make someone more susceptible to developing alopecia, meaning they are more likely to develop it if they come into contact with other factors, such as allergies, viruses, and toxins.
AT can occur at any age, but it is more likely to affect teenagers and young people between 15 and 29 years old. It is more common in people with other autoimmune conditions, such as an overactive thyroid or diabetes. Men and women are affected in equal numbers.
About 5 percent of children with alopecia areata will go on to develop AT.
There is no cure, and the available treatments are not usually effective for severe forms of the condition, such as AT.
Corticosteroids, either as injections or pills, are a common treatment, though not often effective in AT. If they do work, they cannot be used long-term, as they have potentially dangerous side effects.
Sometimes, doctors recommend short-term ‘pulse steroid therapy.’ This includes a treatment called diphencyprone (DPCP), which is thought to benefit some people with AT. It is a topical treatment, meaning it is rubbed onto the scalp and is applied weekly in the hospital or clinic. It is a chemical that causes an allergic reaction, which in turn may stimulate hair growth.
A group of drugs called biologics is currently being tested for AT. These drugs contain particular proteins and are designed to dampen down the immune system.
The hope is that these drugs, which are used successfully to treat other autoimmune conditions, will turn off the inflammatory response thought to cause alopecia.
Sometimes, the immune system can stop attacking the hair follicles and hair may start to grow again. This can happen for no apparent reason and often years after the first symptoms appear.
However, the chances of alopecia areata resolving itself after it has progressed to AT are small.
If someone has had AT for more than 2 years, it is unlikely that their hair will grow back. If it did, this could be fully or partially.
There is currently no cure for AT. Most people with this severe form of alopecia find the available treatments do not work and opt to wear a wig.
Hair loss can cause emotional issues, and many people who experience it feel they are losing a part of their identity. People who have received a diagnosis of alopecia may take many months to come to terms with it.
It is typical for a person diagnosed with AT to experience emotions including sadness, depression, hopelessness, guilt, fear, isolation, loneliness, anger, and frustration.
Many organizations offer support to people living with AT and their families. These include:
- American Hair Loss Association
- Children’s Alopecia Project
- National Alopecia Foundation
People with AT need to take extra care in the sun, as they are more susceptible to burns on the head, especially if they have light-colored skin. These may leave them at a greater risk of developing skin cancer, so covering up with sunscreen, as well as a wig, bandana or hat, is recommended.
Alopecia areata refers to the autoimmune condition that causes hair loss, and AT is a severe form of this.
Alopecia areata is a form of hair loss that affects nearly 2 in every 100 people in the United States. It usually starts as one or two smooth, bald patches but can sometimes spread to cover the entire scalp — this is AT.
When alopecia areata spreads to cover the whole body, including the scalp, eyebrows, lashes, beard, and pubic hair, it is known as alopecia universalis. When alopecia is restricted to just a man’s beard, it is called alopecia barbae.
Some people have claimed that certain dietary supplements and ointments can help in the treatment of alopecia in all its forms, but there is little evidence to support these claims.