I wanted to share our experience with our daughter Esmee's sudden hair loss to alopecia earlier this year. Although we as a family have been through a huge rollercoaster of emotions along the way, Esmee has thankfully emerged stronger and more resilient than ever having experienced this. I wanted to share our story to give other families and individuals new to alopecia hope that things WILL improve, you WILL feel better about the changes that you or a loved one are experiencing. Once we got a proper diagnosis from the hospital, we were able to look at ways to manage and reframe our thinking on Esmee's alopecia.
Of course, initially Esmee's sudden hair loss earlier this year was absolutely devastating. Aged 12, Esmee went from a child with enviable thick hair and bushy brows and lashes to losing almost all of it within the short space of just 2-3 weeks. As parents we struggled to get appointments with our overstretched GP surgery, found it hard to book much-needed blood tests and get an all-important referral to the dermatology unit at our local hospital. We desperately wanted answers as to what Esmee was experiencing and why. We also sought appointments privately but these led to us receiving shoddy mis-information and false promises of hair regrowth within the space of a few months. It wasn't until we got to see the NHS dermatology specialist that we got proper answers for what was happening and why.
In the run up to Esmee's alopecia, we had already been talking to her school about the amount of anxiety she was experiencing with constant testing and homework demands. Esmee also had Covid in the run up to her hair loss. Once we got our hospital appointment (about 3 months after Esmee's total hair loss) we were told that these factors could all have contributed to her immune system kicking into overdrive and start attacking her hair. We were also told that Esmee's previously hidden genetic pre-disposition to alopecia was also, in her case, linked to being an asthma and hayfever sufferer.
Those first few weeks were the most painful of all and something we had never experienced before as parents. My husband and I took it in turns to take over while the other one privately fell apart. My work were very supportive and encouraged me to take a weeks' leave of absence for my mental health which helped tremendously. At first, each morning was painful as we'd temporarily forgotten over night what Esmee was dealing with. There was certainly a mourning period as we adjusted to the change and I had to keep reminding myself (once the blood tests came back as normal) that Esmee was not seriously ill. I had to re-programme my brain about what a healthy child looks like - that total hair loss does not automatically mean life-threatening illness.
Throughout these difficult weeks of hair loss, Esmee still wanted to go to school as her friends were a huge support network. A turning point for us came when we got in touch with The Little Princess Trust who swiftly arranged an appointment with a local specialist hairdresser for a real-hair wig fitting for Esmee. The night before the wig fitting Esmee bravely shaved off her little remaining hair. One of her best friends at school also shaved off her hair in solidarity with Esmee which was a huge help to her confidence and feelings of acceptance. At the hairdressers, the colour match for the real hair wig from the Princess Trust was exceptional and Esmee was delighted to have options to her newly naked head. Alopecia UK's website and
resources for children and young people
have been a huge help to us too.
Over the past few months, after initial topical treatments failed and just aggravated Esmee's skin and brought her out in spots, along with a follow up appointment with the specialist at hospital, we have come to terms with the fact that, at the moment, there are not any safe and effective treatments for Esmee. We are very much in limbo in terms of possible future treatment options. Whilst we have adjusted to this, Esmee has chosen to focus on the positives of her health and is making even more healthy choices for her diet and exercise as she takes control of being her healthiest self. Esmee has also benefitted from a tremendous support network of friends, family and school and counselling sessions which the school has provided.
As parents, we have learnt to resist our natural urge 'to make things better' and be led by Esmee's choices. Although she has wigs and make up options, Esmee for now prefers to go 'au naturel' and, understandably, she actually feels self-conscious wearing a wig and make-up. Of course, she is only 12 and, as she journeys through her teenage years, she may feel differently about what cosmetic options she chooses to explore.
As a family we have come out stronger than ever for this experience. Of course I'm biased but I can't help feeling that Esmee has been an absolute inspiration in embracing her bold new look and celebrating her difference.