Why did it have to happen to me, Mummy?

Ellie was just a few months short of her fourth birthday when her hair began to fall out.

Ellie has Alopecia Areata Universalis, an  auto-immune disease that causes the body’s immune system to attack hair follicles, resulting in dramatic hair loss. Alopecia can occur at any age, however, in most cases, it first presents itself during childhood. Currently, there is no cure.

Although Alopecia isn’t a life threatening condition, it is life changing for the thousands of people who are affected by it.

Ellie’s mum, Andee, talks to My Child Magazine about Ellie’s Alopecia journey so far.

In December 2012, when Ellie was three, she returned from a week–long visit at her Dads, when I noticed how thin her hair had become on the sides of her head. My heart sunk, I immediately knew what it was, as my younger sister had Alopecia Areata as a child. 

I took Ellie to the local doctor straightaway. Even after explaining my family history, she simply said,“It’s just a growing phase, it’s nothing to be alarmed about. She’ll be fine, bring her back in six weeks”. 

Not satisfied that I was being taken seriously, I talked about it with a work colleague who suggested that I get a second opinion through her doctor. I took Ellie to see the recommended doctor who confirmed my suspicions and diagnosed her with Alopecia Areata. That was ten days before Christmas.

By the following February, all of Ellie’s hair had fallen out. By May, she lost her eyebrows, eyelashes and all the hair on her arms and legs and her conditioned progressed to Alopecia Areata Universalis – loss of all hair. 

To an extent, in terms of what to expect, I was prepared because of my sister’s experience with Alopecia. Nevertheless, it was still shocking and hugely distressing.

We tried creams, ointments, tablets and diet changes, but Ellie’s hair didn’t return.  

Even though Ellie was very young, she was aware of her hair loss and that something major was going on. To help her process everything we spent a lot of time with psychologists and psychiatrists, went to skin specialists and just tried to continue on as normally as we could. 

Ellie is now seven years old. She wears lots of funky scarfs and hats. She loves her school and is generally doing well. However her journey with Alopecia certainly continues to have its ups and downs. 

The reactions people have towards Ellie are very mixed. Many people think that she’s been through cancer treatments – the looks can be of sympathy to almost,“Why do you have your sick child out in public.” Sometimes the looks can be really hurtful and as Ellie is growing older she is becoming more aware of just how much people stare at her. I tell her to keep being brave.

Sadly, Ellie is also teased because of way the she looks. She often asks me,“Why did it have to happen to me, Mummy?” It’s heartbreaking … All I can say to her is we love her no matter what and it’s just made her extra special. As her parent, I need to remain strong for her and keep positive, even when it get‘s really tough. It makes me so proud to see her being strong and standing up for herself.

On the other hand, lots of people compliment Ellie on the various hats that she wears. She is always appreciative of their comments and will chat to them and tell them about her Alopecia. As a mum, it is empowering to see how brave your child can be at such a young age.

I really want Ellie to meet other children just like her, so we have been going to events for people with Alopecia and have joined online support groups. Ellie is slowly starting to make more and more friends, from as close to home as Brisbane to as far away as California, which isn’t too bad for a seven year old! 

I know we still have lots of challenges to face. I worry about how she will be treated by others as she get‘s older, especially during the teenage years when appearance and identity become more important. We have lots of girly chats about the positives of Alopecia – like not needing to shave and how by wearing wigs she can change her style whenever she wants! 

My goal is to set Ellie on a path that helps to make her resilient and to see the positives of what can happen to us in life. I want her to challenge the value that society places on how we look. And I want her to know that, yes it will be sometimes tough, but I will always be there to support her.  She really is one of the bravest little humans I know! My hope is that throughout her life, she can embrace who she is, including her Alopecia and sparkle like the bright star she is.

Do I have any advice for parents of children that may be different? I say, always tell your child just how special they are. I think we all need to remind ourselves that everyone is different in some shape or form. If we were all the same, what a boring world we would live in! Every child is unique, some children will have more obstacles to go through than others. It’s our role as their parents to prepare them to get through challenging times and grow as a person into adulthood. On a final note, try not to take the sometimes judgmental stares to heart, just remember that it’s human nature to stare when things are different. 

Alopecia- the facts

• Almost half a million people in Australia are affected by Alopecia Areata.
• Alopecia Areata is an auto-immune disease where the body’s immune system attacks hair follicles, which results in hair loss. Alopecia Areata Universalis is an advanced form of Alopecia resulting in total hair loss, including eyebrows and eye lashes
• Anyone can have Alopecia Areata; women, men and children. The condition often first emerges in childhood.
• People with Alopecia Areata in the family have disposition of being affected.
• The vast majority of people with Alopecia Areata experience some degree of re-growth. But the condition is highly un-predictable – it can get worse or improve at any time.
• Currently, there is no cure for Alopecia Areata and no universally proven therapy to induce hair re-growth and sustain remission.

Support 

The Australia Alopecia Areata Foundation (AAAF) is a not-for-profit that provides people with Alopecia and their families with essential support. AAAF also funds research into the disease in order to find a cure or acceptable treatment and informs the public about the condition. For more information visit www.aaaf.org.au

How can you help?

You can directly help someone with Alopecia by donating your hair to AAAF Wigs for Kids program find out more at http://aaaf.org.au/get-involved/wigs-for-kids/