The diagnosis of alopecia areata from a dermatologist usually follows weeks or months of shock, fear and confusion. The gradual hair loss associated with the disease can be discovered in many ways; unusual amounts of hair on a pillow, clumps of hair clogging the shower drain, a bald patch felt when putting hair up, or a comment made by a hair dresser.
Though there are no two cases of alopecia areata exactly the same, the discovery of the hairloss and the diagnosis of the disease can cause very similar feelings in all patients. It is important to recognize that the majority of individuals with alopecia areata do have patchy alopecia areata, hair loss which presents in patches and experiences regrowth without treatment. However, NAAF understand the concern associated with all types of hair loss, and has programs designed to meet the needs of all alopecia areata patients.
Alopecia areata is a prevalent autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis). The scalp is the most commonly affected area, but the beard or any hair-bearing site can be affected alone or together with the scalp. Alopecia areata occurs in males and females of all ages, but onset often occurs in childhood. Over 6.6 million people in the United States and 147 million worldwide have or will develop alopecia areata at some point in their lives.
Alopecia areata is a highly unpredictable and cyclical condition. The affected hair follicles become very small and produce no visible hair above the skin’s surface. Hair can grow back in or fall out again at any time, and the disease course is different for each person. No matter how widespread the hair loss, most hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. In all cases, hair regrowth may occur even without treatment and even after many years.
In some people, the nails develop stippling that looks as if a pin had made rows of tiny dents. In a few, the nails are severely distorted. However, other than the hair and occasionally the nails, no other part of the body is affected.
Alopecia areata is considered a skin disease because of its location on the largest organ of the body. Fortunately, unlike the majority of other skin diseases, the primary symptoms of the disease do not include rashes, hives or itching. However, the exposed skin needs to be cared for just the same.
In alopecia areata, the body is without hair in many, if not all, locations. It is therefore essential that individuals with alopecia areata are committed to daily application of both lotion to prevent unnecessary drying and a high SPF sunscreen to prevent exposure to unhealthy rays.
Use of hats and accessories are another great way to protect the head, ears and face from unwanted exposure. Please visit the Alopecia Areata Marketplace for more ideas on how to keep your skin protected.
After an alopecia areata diagnosis, it is important to realize that you are not alone. NAAF has many programs and resources aimed at connecting individuals who have alopecia areata in common. Whether you would like to talk with another person on the telephone, or you would prefer to have your family attend a local support group, NAAF can help. It will do you no good to keep your questions and your feelings bottled inside; there is somebody who will understand, and may even have a bit of valuable advice.
If you would like to discuss your experiences with alopecia areata in a group setting, the Support Group Program will be the best fit. It is a great way to get support and know you are not alone. If you are more comfortable communicating with distance, the NAAF Message Board or Pen Pal Program provide a great opportunity to meet others via our secure online message board or by communication via email or by letters. The online systems can be a great fit for those with busy schedules or if you cannot attend a meeting. You can also speak one on one with our experienced telephone support contacts.
Once a year, the Foundation organizes a weekend summer conference for people with alopecia areata and their families. Doctors, researchers, and exhibitors attend to present and hear the latest developments in research, treatment, support, and cosmetology. At the conference, people from all over the world find a new family of support to help them cope with alopecia areata in their daily lives. These conferences have grown every year and have added impetus to the Foundation’s work and public awareness of alopecia areata.
We're here to help; we encourage you to get connected through as many of these programs as you would like.
Treatment options are best discussed with the dermatologist who made the diagnosis. However, there is general information that NAAF can provide, based primarily on your type of alopecia areata. This information is only useful as a resource; your doctor should be your primary source of all medical information. Click here to learn more.
If you are unable to find a dermatologist in your area who treats patients with alopecia areata, please contact the NAAF office. NAAF has lists of dermatologists across the country who treat alopecia areata patients.
We will send you a basic information packet that includes:
- A letter of introduction.
- A list of NAAF support groups and telephone support contacts.
- What You Should Know - Main informational brochure about what you and your family should know about alopecia areata and NAAF.
- Helping You Cope – Brochure to help individuals of all ages cope with the disease.
If you specify that the person with alopecia areata is a child (under age 18), we will send the basic information packet plus:
- A Parent’s Guide – Informational brochure about parenting a child with alopecia areata.
- From A Child’s Point-of-View – Brochure written and illustrated by children for children and parents.
- NAAF newsletter excerpts on raising a child with alopecia areata and promoting self-esteem.
- Two stories from written for young children (age 13 or under)