Botany

Today I want to share with you my alopecia story, right from the beginning. This blog story covers the three progressive stages of alopecia that I experienced, so feel free to skip down if there's a particular type of alopecia you're interested in (AA, AT or AU). I have also recorded and uploaded a slightly more in-depth version of my story with photos to Youtube, so be sure to check that out!

Alopecia areata (AA) - age 16-23

My alopecia journey started when I was 16 years old when a friend brought to my attention that I had about a 1cm bald patch on my eyebrow. In the months leading up to this, I had noticed my right eyebrow thinning and thickening over time, but didn't think much of it. Upon seeing this bald patch, I knew it was alopecia due to a history of it in my family so I was aware of what these patches looked and felt like. I didn't seek out a Dr's appointment at this time as it was only on my eyebrow and it was easily managed with makeup.

At age 18, I got my eyebrows micro bladed/semi-permanently tattooed as I was heading off to University and intended on joining the swimming team, I didn't want to be worrying about my eyebrow patch around new people! My alopecia on my eyebrow continued to come and go but most of the time there was no hair in that patch where I had first noticed it.

At aged 23 I noticed a bald patch on my scalp whilst I was scratching my head one day, my heart sank as I realised that my alopecia had progressed. I detail this a little more in my youtube video and I am conscious of the length of this post, but, I had recently had a very stressful time which myself and the dermatologists that I processed to see attributed this progression to. The patch was a few cm's big, this was the start of a very quick progression of my hair loss. I visited my local GP who officially diagnosed me with AA, gave me blood tests and referred me to a dermatologist.

1st patch.PNG

Alopecia areata (AA) - Alopecia totalis - age 23

A short while after being diagnosed with AA I saw a dermatologist at my local hospital. By this time I had several patches and my initial one has progressed in size significantly. My hair was coming out in clumps and showers were particularly difficult due to how much hair I would loose each time. I was given steroid injections into my eyebrow which did result in some growth, but they fell out again after a few weeks.

Within months, my eyebrows and eyelashes were scarce and almost of all of my head hair was gone. I was experiencing symptoms discomfort, scalp pain, redness and little black dots all over my scalp in addition to depression, anxiety and general upset. I was no longer able to cover up my hair loss and went to get my first wig which was a synthetic wig from Rene of Paris. Not long into wearing my wig, I decided to shave my head - I had very minimal scalp hair at this time but it was rather itchy under my wig and was difficult to look at. I found the shave to be really upsetting..I know for many people this can bring a sense of gaining back some control but I wasn't ready for this step, even though it would have been a matter of weeks before my hair went on its own judging by the rate it was coming out!

Alopecia totalis (AT) - Alopecia universalis (AU) - age 23

After I shaved my head I had no regrowth on my scalp and I noticed that my eyelashes, eyebrows and hairs on my arms and legs were almost completely gone. At this point, I was diagnosed with Alopecia totalis by my GP (characterized by the complete loss of hair on the scalp).

It was around this time that I started to feel very frustrated with my hair loss, I didn't feel I was doing enough or has enough advice about my condition. I decided to seek out private health care to speak with a specialist which I did at Benenden Health care. This appointment was very reassuring in many ways - I felt for the first time I was being truly listened to and provided with some genuine information and options to try to help out my hair loss.

At this appointment, I was told my alopecia is not scarring and therefore have a change of regrowth in the future. I was also put on a 6 week course of steroid tablets to help suppress my immune system with the hope that once it recovers, my immune system will stop attacking my hair follicles. I was also diagnosed at this appointment with Alopecia universalis - loss of hair from the entire body.

I was warned that I could get poorly on these tablets, but I noticed no real effects except some fatigue, mood swings and headaches. 

Alopecia universalis to the present day!

Following the steroid treatment, I saw no regrowth or changes. I continued to, and still do, see my dermatologist every three months for check-ups. Ultimately, my alopecia was attributed mainly to stress and a possible combination of genetic factors. I now have a range of wigs that I like to swap between but ultimately decided to brave the bald!  I am in the process of getting a non-surgical hair replacement fitted which I hope will give me more options and a stronger sense of self-identity again.

 

The whole progress was really challenging but I have since come to terms with my hair loss and just want to help others in the same situation! The support of my family and friends has been invaluable and I am extremely appreciative to have such a support network behind me.

Please do reach out to me if you want to chat, I'd love to hear your story!

I am mostly active on my Instagram @polefit_jess_alopecia but will be uploading frequently to my youtube too.

Jess x