Navigating Alopecia: Resources for Parents

Whether you have been newly diagnosed or have been living with Alopecia Areata for some time, AAAF recognises that when a child has Alopecia Areata, this affects the whole family. Information provided below is based on psychological research, AAAF’s committee members and our broader community’s lived experiences. We hope that the information, advice and stories we share here can help you and your family to have a positive journey.

About Alopecia

Alopecia Areata is a disease that results in the loss of hair on the scalp and elsewhere on the body. It’s often not well understood and can be confusing. Alopecia Areata is believed to be an auto-immune condition.

This means that our immune system, which is supposed to defend against disease and infection, begins attacking a part of our own body. For people with Alopecia Areata, the body treats its own hair follicles as foreign tissue and attacks them, which slows or stops hair growth.

There are 3 main types of alopecia:

  • Alopecia Areata, which means patches of hair loss.
  • Alopecia Areata Totalis, which means complete loss of hair on the scalp.
  • Alopecia Areata Universalis, which means complete hair loss to the entire body.

In all forms of Alopecia Areata, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. That means that hair regrowth may happen spontaneously even without treatment and sometimes after many years of hair loss. Each person experiences the condition differently. The hair may grow back and fall out again many times, or cycle through various types of alopecia throughout their lifetime.

Frequently Asked Questions

Who gets Alopecia Areata?

Alopecia Areata occurs in males and females of all ages and races; however, onset most often begins in childhood.

Is it life threatening?

No. However, Alopecia Areata is life-changing and its sudden onset, recurrent episodes, and unpredictable course can have a deep emotional and psychological impact on the lives of those affected by this disease. People with Alopecia Areata are fully capable of living happy, healthy lives and there is no reason the condition should hold them back.

Is it common?

Roughly 1-2% of the population have some form of Alopecia Areata. It is best to describe it as “not uncommon”.

What causes Alopecia Areata?

Alopecia Areata is considered an autoimmune disease, where the immune system mistakenly attacks its own hair follicles. Why the body does this is still unknown. Many people say the condition is stress induced, but there is little consistent scientific proof of this.

Is it infectious?

No. There is no way in which a person with Alopecia Areata can transmit the condition to anyone else.

Is Alopecia Areata inherited?

Scientists believe that there may be a number of genes that predispose certain people to the disease. It is highly unlikely that a child would inherit all of the genes needed to predispose them to the disease. Even with the right (or wrong) combination of genes, Alopecia Areata is not a certainty. Studies suggest that in identical twins, who share all of the same genes, the concordance rate is only 55%. In other words, if one twin has the disease, there is only a 55% chance that the other twin will have it as well. This shows that other factors besides genetics are required to trigger the disease.

How does it start?

The body’s immune system wrongly attacks the growing cells in the body’s hair-producing follicles, where the hair starts to grow. This stops them producing new hair and causes existing hair to fall out. The cells which produce the hair, the follicles, do remain active so there is always the potential for hair to start re-growing

What body areas are affected?

The scalp is the most common area and generally the first area to experience hair loss. Hair loss can also occur from the eyebrows, eyelashes, facial hair, arms and legs. Fingernails may also be affected with pitting.

What does it look like?

The patches are smooth and round, sometimes with few remaining hairs in the centre. Around the edge of the patch some stub-like hairs can usually be seen (often called “exclamation marks” haris, as they are thicker at the tip than at the scalp level).

Can the loss be diffuse?

Less commonly, some hair may be lost over wide areas, causing general thinning of the hair. This can cause “hair to turn white overnight” by selectively affecting dark hairs and leaving grey hairs.

How is it diagnosed?

Alopecia Areata is diagnosed through a medical history and physical examination. Your doctor will ask questions about the hair loss, look at the pattern of hair loss, and examine the scalp. Hair can be plucked and examined under the microscope and if tinea is suspected, hairs may be taken for culture. For very careful study, a small biopsy may be performed for microscopic examination of the scalp skin. In most cases, tests are performed only if there is a need to assess general health. Blood tests do not show any abnormality in people with Alopecia Areata.

How will Alopecia Areata affect me and my family?

This is a common question, particularly for children, teens, and young adults who may live with the effects of Alopecia Areata for many years. The comforting news is that Alopecia Areata is not a painful disease and does not make people feel physically sick. It is not contagious, and people who have the disease are generally healthy otherwise. It does not reduce life expectancy, and it should not interfere with going to school, playing sports and exercising, pursuing any career, working, marrying, and raising a family.

Can the hair grow back?

There is every chance that the hair will regrow with or without treatment, but it may also fall out again. No one can predict when it might regrow or fall out. The course of the disease varies from person to person. Some people lose just a few patches of hair, then the hair regrows, and the condition never recurs. Other people continue to lose and regrow hair for many years. A few lose all the hair on the scalp; some lose all the hair on the scalp, face and body. Even in those who lose all their hair, the possibility for full regrowth remains. The course of Alopecia Areata is highly unpredictable, and the uncertainty of what will happen next is probably the most difficult and frustrating aspect of this disease. The re-growth can be any texture and colour, from fine, downy white hair, to hair identical to your original hair colour and texture. 

Does Alopecia Areata affect general health?

No. All aspects of general health are unaffected – apart from the rare associations with other diseases. People who are affected by Alopecia Areata are usually otherwise healthy.

How to explain Alopecia to Young Children

Alopecia Areata can be difficult enough to explain to adults, so explaining the complexities of how autoimmune conditions work to children can feel daunting. 

However, AAAF believes that it is very important for children with Alopecia Areata to understand what is happening to their body as much as is possible for their age. Understanding the condition will help children to feel more in control of what’s going on and feel more confident, and help to combat feelings of fear or anxiety. 

Here is an example which may help you to explain the condition to children:

“Everyone has a system in their body which helps to keep them healthy. It works like a troop of very tiny soldiers, which receives orders from your brain when you are sick or injured. These soldiers (called the immune system) seek out the things that might make you sick and attack them, like germs or viruses, in order to keep you healthy.

Sometimes, these soldiers get confused by the orders they get from your brain, and instead of attacking germs or viruses they attack parts of your own body. This is what happens with alopecia areata. Your soldiers don’t understand their orders, and they begin to attack your hair follicles -the place your hair grows from. This is what makes the hair fall out.”

Understanding Your Options

Treatments

Although there is no cure for Alopecia Areata there are medications available that can help hair grow back in some cases, at least temporarily.

Here are some important things to keep in mind:

  • Although these treatments may promote hair growth, none of them prevent new patches or actually cure the underlying disease.
  • Consult your health care professional about the best option for you. A combination of treatments may work best.
  • Ask how long the treatment may last, how long it will take before you see results, and about the possible side effects.
  • Seek second opinions from other professionals when necessary, as different practitioners may suggest different options.
  • Seeking information from other people with Alopecia Areata can be a great way to find out more.

Electing not to try any treatment is a completely valid option. Many people find the emotional ups and downs attempting treatments more distressing than accepting the condition and choosing to move forward. AAAF believes that supporting emotional and psychological health is vital during this time, and recommends reaching out to a mental health professional if needed. 

When discussing any treatment for a child with Alopecia Areata, AAAF believes it is always best to try to include the child in the decision-making process, as much as is age appropriate. Making sure they understand what is going on will help to combat feelings of anxiety and fear, and having a say in their medical treatment will help them feel more in control of the condition.

Wigs and hairpieces

Many people with Alopecia Areata choose to wear wigs or other hairpieces. These can help them feel a sense of control over their appearance and their condition, and feel more confident when in public.

There are many different types of wigs and hairpieces available and buying a wig for the first time can be challenging. It can also be a major financial investment, so to minimise the risk of getting something you’re not happy with, AAAF has a guide available on our website which may help you decide what is right for you. Our Wigs for Kids program is also available to assist in the cost of purchasing a wig for children under the age of 18.

In general, AAAF does not recommend wigs for very young children, as they can be difficult to care for and may get in the way of kids during normal play.

Hats and scarves

It is important to note that wigs and hairpieces are not the only way to manage alopecia. Many other people feel that wigs are uncomfortable or get in the way of day to day life. Once again, there is no right answer – just what works best for your situation. These people may choose to wear hats or head scarves to keep their heads covered or protected from the weather. 

Other considerations

In addition to these methods of head covering or treatment, there are measures that can be taken to minimise any negative effects of hair loss, particularly relating to loss of eyelashes and nasal hair.

  • Sunscreens are important for the scalp, face, and all exposed areas.
  • Glasses or sunglasses protect the eyes from excessive sun and and from dust and debris when brows or lashes are missing.
  • Wigs, caps, or scarves protect the scalp from the sun and keep the head warm.
  • Ointments or saline spray can be applied inside the nostrils to keep them moisturized and help protect against dust or particles invading the nose when nostril hair is missing.

Support for your Family

AAAF has a variety of resources available designed specifically to assist the entire family in their journey with the Alopecia Areata. Which options work best for you will depend on the age and personality of the child with alopecia, and you family’s individual situations. Further information about all resources listed here can be accessed via our website: www.aaaf.org.au

Registry

By registering with AAAF, we can keep you up to date with the latest research, events and programs in your area. We strongly recommend registering via our website as it is the best way to stay in the loop about anything new.

Video Resources

“Alopecia Areata: Why Does My Hair Fall Out?” was created by the AAAF as a resource for children, their families, friends and schools to help understand and explain Alopecia. It is aimed at 4-12 year olds and contains information about what the condition is and how to manage it. It also includes interviews with several children with Alopecia and their experiences with the condition. It is available in DVD format or online. 

For older children and teens, we also have a series of videos discussing some of the emotional issues that come with Alopecia Areata, such as telling friends about the condition and coping strategies, and a series on styling, including makeup tips, information about wigs and how to tie head scarves. They are available as a DVD from our e-store, or online.

Support Ambassadors and Branch Managers

AAAF Support Ambassadors assist the Foundation by actively promoting and creating awareness about the condition. All have personal experience in living with Alopecia and can be contacted directly for one-on-one support, along with hosting information sessions about Alopecia at schools, clubs and youth groups.

AAAF has Branch Managers in most states. These are all individuals who have experienced Alopecia Areata themselves, or are a parent supporting a child with the condition. They are the first port of call for people with Alopecia Areata in their state and can provide assistance and answer inquiries. Branch Managers also coordinate events in their state on behalf of AAAF and are a great way to get in touch with other people who are in the same situation as you.

Support Groups

One of the most beneficial things you can do for children with alopecia is remind them they are not alone. The AAAF has branches in most Australian states and local online forums which you can connect to. As a parent, you can use these groups to connect with other parents within you local area to organise meetups or playdates, or share advice and stories. For teens and young adults, the groups are a great way to make friends with other people with the condition and provide a supportive environment to share any questions or concerns they may have with people who have been through the same experiences.

Brochures

AAAF has a range of brochures about Alopecia Areata which can be provided in hard copy or access via our website.

  • Teens talking about Alopecia Areata
  • Coping with Alopecia Areata
  • The grieving process that can accompany hair loss
  • Parents talking to parents
  • General information

School Pack

AAAF has created a School Pack designed to help teachers and educators introduce Alopecia Areata to the classroom. Developed with the help of child psychologists and early childhood educators, this pack includes lesson plans, advice from other parents, sample letters, and templates to use to inform school staff about Alopecia Areata. 

The School Pack was designed with the belief that information, awareness and communication are the best tools for combatting bullying and ensuring a happy and healthy school experience.

Wigs for Kids

AAAF believes that the decision whether or not to wear a wig is a personal choice. As government assistance and Medicare / Private Health Care rebates are limited and vary across states, AAAF established the Wig for Kids Program to ensure that children wanting to wear a wig get the information, service and support needed.

Events

The AAAF holds many different events throughout the year. From trivia nights and Open Days, to casual catch ups and morning teas, we have something that will suit children and families of any age. You can find out about our events by registering, following us on Facebook, or checking out our website.

School and Bullying

School can be a complicated time for children with Alopecia Areata. For this reason, AAAF has created a School Pack, designed to help parents and teachers to introduce Alopecia Areata to the classroom which is available on the AAAF website. For further information about managing the schooling period, consult the School Pack.

For young people with Alopecia Areata, bullying can be a concern. It is also common for other children to mention the hair loss, point it out or ask invasive questions about it. This can feel very uncomfortable for the child with alopecia. Many children who engage in these behaviours do so simply because they don’t understand what the condition is.

If your child reports being bullied due to their condition, it is important to ascertain exactly what happened and whether it was truly bullying or simply ignorance. This will affect how you will want to manage the situation. Serious, consistent, or physical bullying should always be reported to staff. Lack of understanding of the condition can be dealt with through information and awareness.

Want specific tips on how to navigate bullying? Go to our Parents Pack under the “School Bullying” section or our School Pack.

Siblings of Children with Alopecia Areata

When a child is diagnosed with Alopecia Areata, it affects the whole family. Siblings can go through a wide range of emotions that can affect their attitudes and experiences. 

Siblings of children with Alopecia may feel some of the following: 

  • Protective of the child with Alopecia Areata
  • Confusion about what is going on and why
  • Jealous of the attention the child with Alopecia Areata is getting
  • Anxious about developing the condition themselves
  • Guilt that they do not have the condition (“Why them and not me?”)
  • Embarrassed or upset when people about the condition, or stare at and tease their sibling

Equal treatment for all children

It’s important to be mindful of spending time and attention on siblings equally. Spending time with each child individually can help, as can encouraging involvement in activities like sport or the arts, where each child can shine and feel accomplished by their own merits.

Talking and listening to your children

Ensure your child knows they can always come to you and share their feelings and have them respected. Understand that they may sometimes express negative feelings like jealousy, anger or guilt about their sibling’s condition and that this is normal. If you sense that these feelings are worsening or not going away with time and management, you may wish to seek support services such as a school counsellor or psychologist.

Want more tips, resources and stories? Check out our Parents Pack, a 27-page PDF full of everything you need as a parent to feel supported throughout the journey of Alopecia Areata!

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