New Facebook Support Group for Children with Alopecia

Questions from strangers wanting to know if you have cancer as well as a lingering uncertainty about how the condition may play out make Alopecia Areata an autoimmune disorder that leads to patchy hair loss an incredibly difficult thing for children to endure.

In some “lucky” cases, bald patches can be kept covered under a cap and go on to heal itself after a few months, meaning no one need suspect a thing. But in a great many instances, concealment is next to impossible because the hairloss doesn’t clear up. Sometimes it gets worse. Sometimes it leads to a more extreme form of Alopecia Areata such as Alopecia Totalis  or Alopecia Universalis, which both lead to total hair loss on the head. The latter means that all of the hair on the body falls out, too.

And because treatment options for children are more limited than for adults where bespoke alopecia areata treatment courses are an option and regularly prove helpful children under 16 years of age have little choice when it comes to Alopecia Areata other than to try and deal with it. As 11-year-old Molly Milligan from Bournemouth has found out, it isn’t easy.

Worrying about hair loss

According to her mum, Claire Heaton, who contacted Belgravia to ask if we could help spread the word about a new Facebook support group she has created, Molly, pictured, has gone from “a confident out-there girl to an emotional, self-conscious little girl who lives each day worrying when her next hair loss will happen and will it all fall out.”

This change in Molly has all happened over the past three years, after she was diagnosed with Alopecia Areata. Adds Claire: “As Molly’s mum I have also felt heartache for her not being able to have all the answers she needs and the promise she wants to hear that her hair will never fall out. I can't give her that.”

What Claire has realised she can give her daughter as well as other children with hair loss is some moral support. Her idea for setting up the Facebook support group Mollys Roots and also a new Twitter account @molly_roots, and hashtag: #DontCareNoHair stems from a decision kind Molly made last year to try and raise money for the Little Princess Trust. This popular UK charity donates real-hair wigs to children who have lost their own, usually as a result of chemotherapy treatment or a form of Alopecia Areata. With help from the local community Molly helped to raise an impressive £500.

The social aspect of the fundraiser was inspirational. Says Claire: “I have found talking and sharing stories with other families in similar situations a great help. This is where the Facebook brainstorm has come from.”

Emotions, fears and stories

The new support group, she says, is “where families and their children can blog emotions, fears, stories and the journeys they are on. Share photos of their wigs or even with no hair. We want diaries of feelings and also children to learn to name their wigs. Molly has called hers ‘Bob’.”

Any money that the Facebook group raises will be spent on days out for families with children who have Alopecia Areata though Claire says that 30 per cent will be kept back and donated to the Little Princess Trust.

The whole venture, says Claire, “will offer some hope and sparkle to these children as well as raise awareness that we are all different, but all special and unique. We are hoping that celebrities will tweet us, help raise money and get this message out.”