Living with Alopecia Areata

Alopecia Areata in Men

Alopecia areata is a common condition that does not discriminate. It can occur at any age, and affects males and females equally. Though many men without alopecia areata lose or have lost their hair, and the bald look on men has become acceptable if not desirable, adapting to a diagnosis of alopecia areata as a man can still be extremely difficult. The National Alopecia Areata Foundation has many programs that were created to ease the burden of all patients with alopecia areata, including men.

Alopecia Areata in Women

Alopecia areata is a common condition that does not discriminate. It can occur at any age, and affects males and females equally. Women with alopecia areata are immediately confronted with the drastic change in their appearance, and the implications of this on how they view themselves and how society views them. The National Alopecia Areata Foundation has many programs that were created to ease the burden of all patients with alopecia areata, including women.

Nails

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.

Skin

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 don't 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 unneccesary drying and a high spf sunscreen to prevent exposure to unhealthy rays.

Use of hats and accessories are other great ways to protect the head, ears and face from unwanted exposure. Please visit the NAAF's Proucts page for more ideas on how to keep your skin protected.

Alopecia areata can be challenging for those who have the disease and for their families. Although the illness impact people differently, there are some common experiences among those affected. For example, you might be thinking that no one knows or understands what you are going through. Many people with alopecia areata think this and then feel immense relief when they finally meet someone else with alopecia areata or when they learn of the National Alopecia Areata Foundation (NAAF). In addition to having common thoughts and feelings about alopecia areata, there are also common psychological reactions to the disease.

People who have alopecia areata and their family members often experience a variety of feelings and frustrations. Reactions to the disease include the following:

  • Alone, withdrawn, and isolated
  • Loss and grief
  • Fear that others may find out you have the diseasse
  • Fear that others may find out that you wear a wig
  • Sadness and depression
  • Hopelessness
  • Anger
  • Embarrassment
  • Guilt or self-blame that you somehow brought the disease on yourself
  • Guilt related to how the disease is affecting family members and loved ones
  • Frantic in regard to searching for an answer or cure (going to extremes)
  • For parents, guilt that they may have genetically contributed to their child’s disease
  • For parents, helplessness that they cannot stop the disease or help ease their child’s pain
  • For siblings and other family members, shame and anger because the disease has also affected their lives

How do you know if you need counseling?

For many people, alopecia areata is experienced as a trauma. The disease can also be traumatic for the parents or other family members of those who have the disease. Many people who have experienced trauma find it helpful to talk with a mental health professional who can help them work through their feelings and learn coping skills. A good way to know if you need counseling is to examine how alopecia areata is affecting your life.

Although experiencing the psychological reactions mentioned above is common, if your feelings are intense or overwhelming, or if your feelings and reactions are persistent, counseling should be considered. If alopecia areata has caused a dramatic change in your lifestyle, for example if you  no longer participate in activities that used to bring joy to your life, if you are missing work or school frequently, or if you no longer feel you can talk or reach out to those who are close to you, we suggest that you may need counseling.

We often recommend alopecia areata support groups; often these groups alone provide sufficient help. However, counseling from a trained professional can be beneficial as well. Counseling gives you more time to focus on your own specific experiences and provides a safe environment in which you can share confidential matters. This will enable you to discuss issues that you may not want to discuss in front of a group.

Finding a Mental Health Professional

One way to find a mental health professional is by asking your physician for a referral. Another way is to call your local mental health association or crisis hotline and ask for a referral. You might also want tot ask a friend or fellow NAAF support group member who has been in counseling for a personal recommendation.

Though an alopecia areata diagnosis would have no affect on one's ability to perform in the workplace, many times individuals become distracted by their new appearance and the perceived reactions from co-workers.

Whether or not you decide to open up about your alopecia areata in the workplace is entirely up to you. For many individuals, it depends on the nature of their work enviroment, the level of closeness they feel with their co-workers, and ultimately, the level of safety they feel in discussing what they are going through.

There are many different ways individuals have opened up about their alopecia areata in their workplace, though it generally involves a component of education about the disease. If you would like to hear about different stragegies used to educate the workplace about alopecia areata, as well as different ways that individuals have opened up about their disease, please contact the NAAF office.

It is important to educate the administration, teachers and fellow students of your child about alopecia areata. Though the autoimmune disease is common, many people still do not know about alopecia areata. It is important to stress, particularly in a classroom setting, that your child is not sick, that alopecia areata is not contagious, and that alopecia areata will not limit a child from doing all of the activities that other children do.

The National Alopecia Areata Foundation has created a School Pack to help parents, teachers and administrators educate students about alopecia areata. The pack includes a copy of the 9 minute video on DVD, "Alopecia Areata: Why My Hair Falls Out" and our "Alopecia Areata School Guide" filled with tools for students, parents and teachers for success in the classroom. Please contact NAAF if you would like a School Packet mailed to you.

“Head Full of Doubt” is about Katarina, an 11-year-old girl telling her story as she prepares to inform her classmates that she has alopecia areata.  This inspiring and touching video was made by Brian Lewis, the broadcasting instructor at Katarina’s school, and can be used for all grades along with our other school materials. 

NAAF Children’s Video

The National Alopecia Areata Foundation has created a Children’s Video that is intended for use in the home as well as the Classroom.

Title: Alopecia Areata: Why My Hair Falls Out 
Time: 9 minutes

Purpose: To be used by young people who have alopecia areata to help explain to their peers, classmates, friends, teachers and other adults what alopecia areata is and how it feels to have it.

Cost: No charge for the video. It is made possible by a grant from the Castillo Family of California. A shipping fee may be required to ship two or more video's to the same address, or for videos sent in conjunction with other orders, or for international shipments.

Who should order: Parents, teachers, school nurses, principals, and others who need to learn more.

How to order: Phone: 415-472-3780  Fax: 415-480-1800 or email iinfo [at] naaf.org (nfo [at] naaf.org).

The alopecia areata diagnosis in adulthood differs from the diagnosis in children in that once most individuals have entered adulthood, they have established their place in society. Most adults are involved in many relationships based on their identity, including how they view themselves and how they are viewed by the world.

Opening up to a significant other about one's alopecia areata can be a stressful endeavor. Many individuals choose to do this immediately upon embarking in an emotional relationship with someone, while others choose to wait until deeper trust in this significant other has been established.

NAAF has heard many inspiring stories about how individuals have shared their experiences with alopecia areata with a loved one, and we would love to share these with you. If you are unsure about how to open up about your alopecia areata, please contact the NAAF office for support!

Having Children after an Alopecia Areata Diagnosis

As an adult with alopecia areata, the question of having children is practically inevitable. Many adults with alopecia areata worry that they will have children with alopecia areata, which impacts their outlook on bearing children. Though no one will be able to give you a definite answer as to whether or not you will have a child with alopecia areata, the odds are in favor of not letting the disease stop you. There is a one in five chance that an individual with alopecia areata could pass the disease onto their children, though there are many individuals who have had more than five children, none of whom became affected.

Ultimately, the choice is up to you and your partner. If you would like to discuss this more with the NAAF office, please feel free to contact us.

We are also very excited to offer our Cosmetic Guide: Tools for Everyday Beauty.

As a foundation, we realize the importance of supplying as much information and help to our members as we can. We know that thousands of articles about cosmetic subjects can be accessed on the Internet, but in this publication we focus on information that might make your experience with alopecia areata easier. We hope you will find some pointers and new ideas that are helpful. 

While people have different opinions and experiences, there are a few things that we all seem to share and that seem to be standard in the cosmetic industry. This guide will not have all the answers but it will offer a sampling of information that people with alopecia areata have found to be helpful. Of course your cosmetic professional will have the best advice for you.

Topics include:

  • Cover or Camouflage Your Scalp with Topical Products
  • Wigs Questions & Answers
  • How to Care for Human Hair
  • How to Care for Synthetic Hair
  • Making Fake Look Fabulous-Eyebrows
  • Making Fake Look Fabulous-Eyelashes
  • Alternatives to Wigs
  • Notes & References

Contact the