Deanna's Story
Hi, My name is Deanna and I am Libby’s mum. Hair had always been a special part of my relationship with my daughter. The day she was born the nurse said “oh look she has curls”. Even babies hair has impact! Then as a toddler her hair grew long, blonde, curly and well really very cute. Libby liked her hair but there were so many other things to be interested in that it was never something she took great pride in. Where as I on the other hand thought wow, my daughter has the crown and glory that my Dad often spoke of.
Pre-teens and her hair was to her waist. She had just begun to look after it herself (before this it had always been unmanageable long for her little hands, so I was the hair doer). She had just turned 12 and seemed to be molting all of a sudden. Even though I thought this strange her hair was still thick and long. Then one evening at the dinner table I really started to study her and my heart suddenly skipped a beat. Above her ears the hairline seemed to have disappeared. At that moment I knew something very big was happening and I instinctively knew I wasn’t going to be able to make this stop. I had vague recollections of hair loss. One of my brother’s friend’s mothers didn’t have hair. Oh god, please don’t let this happen to my daughter…………
It did happen and six months later she had lost all of her hair. That journey of hair loss was horrendous. I felt very alone and knew that I had to find solutions for her and our family. Some of my recollections of that time were my daughter asking me “has it stopped falling out yet mum?” and my answer always being the same “not yet Libby”. Having handfuls of hair to dispose of and throwing them out the window so we didn’t have to face the shedding. (I wouldn’t recommend the throwing out the window option for disposing of hair as a year later the hair was still there. I found this while fossicking in the garden. It was one of those heartbreaking times where you just look and stare and can’t believe that your daughter’s hair has all gone but seems to have survived outside on the ground.)
During this time we went to the Dermatologists and were told that Libby had Alopecia Areata. We started to understand that there was no medical cure. I worked to get through the everyday chores without loosing the plot. Going out became a trial, the constant questioning about what was wrong with Libby. Dealing with the stares and harassment by her peers. The looks of sympathy (always kindly) as everyone thought my daughter was dying. The questioning “Does your daughter have cancer?” The answer no she has alopecia areata – the slightly dismissive look, “oh that’s not so bad then is it, it will come back won’t it?? What could I say to that, I knew that this was not life threatening and I was grateful for that. There reply was understandable really as for many with Alopecia Areata the hair does come back and in my daughter’s case her hair has returned twice in the last five years but only to fall out once again. There is no rhyme or reason for the hair loss or regrowth and believe me this doesn’t make things easier. The thought of regrowth for my daughter is sometimes scarier to deal with than the loss. The worst thing to come to terms with is the loss of control. I use to lay awake at night thinking of ways to make this right for her and eventually we came up with a solution that worked for her and our whole family.
Finding a solution is a multi faceted problem and every child and family will deal with this differently. My only advice is to keep communicating, even when it’s painful, even when loved ones close down, even when they scream at you to leave them alone. Keep moving forward and find solutions so the pain ends and the solutions start to win.
Part of the solution for Libby and us was for her to wear a prosthesis, not a wig that I could wear but a prosthesis made specifically for her and her needs. This enabled Libby to become anonymous amongst her peers and she was able to grow without the constant questioning. We always encouraged Libby to be open about her condition and as a result she doesn’t hide that she has alopecia. This takes courage and I’m constantly proud of how she handles herself and this condition.
The other parts to our solution were to be well educated about Alopecia Areata and find others who have come to terms with it and learn from their experiences. I have been very fortunate to have met many wonderful giving people that have made this journey all the easier.
I feel that Libby and my family are now at a place where we have accepted this condition. Not to say there aren’t times where it still worries and upsets us but when I look at my daughter and see that she is happy and doing well ……….. that’s all I need to see really isn’t it.
Deanna
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