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Home   /   Hair does not define us: Alopecia Universalis – Rachael’s story

Alopecia – we have all heard of it, and we all understand that it means in short, hair loss. But you do not really understand alopecia in its full force, until somebody you know battles it on a daily basis.

My cousin, Rachael, is an alopecia awareness advocate. She has built up a large community and following on social media, which is where she shares her life with alopecia, and more specifically, alopecia universalis.

Alopecia: the partial or complete absence of hair from areas of the body where it normally grows; baldness.”

For twenty years, Rachael has lived with alopecia. When she was nine years of age, she was diagnosed with alopecia areata, which is also known as ‘spot baldness’. “Although I have had alopecia for 20 years for the first 15 years my hair always grew back. Growing up I remember having the odd patch no bigger than a 50p coin which might have meant a parting change to blend in or a dab of eye shadow but within a month it was regrowing!”

In the beginning, it only affected patches of Rachael’s hair, but a few years down the line when Rachael was diagnosed with alopecia universalis, that’s when it became more severe. “In 2012 it started falling out and before I saw any regrowth more was falling out rapidly compared to what I considered normal. I can honestly say that my alopecia has always been stress related and I am fairly certain I know what my triggers were.”

“When I was diagnosed with AU I was actually still optimistic I wouldn’t lose ALL of my hair. My eyebrows and eyelashes hadn’t even started falling at that point!” Rachael explains. Currently Rachael is completely bald, and since 2012 the only regrowth she has seen, was full regrowth when pregnant with my son in 2014. “However it was gone again 6 weeks after birth. Also when pregnant with my daughter every single hair on my body fell out and then I had patchy regrowth on my head for the last month of pregnancy which again was gone 6 weeks after birth.”

Since wearing a wig Rachael has been open with her friends and family, as she did not want any awkward situations if she bumped into anybody, “in 2 years I have changed my hair A LOT.” and this is apparent when you look at her Instagram account – she often thanks alopecia for enabling her to have any kind of hair she wants, as when you have hair, you can’t have pink hair one day, long blonde the next, and short brunette the day after. Rachael believes that sharing it with her friends and family aids her mental health, “every time I have shared it has been another weight off my shoulders, I have no need to worry about what other people think as it only matters what I think about myself.”

As mentioned previously, Rachael has an Instagram account (as well as a YouTube account too), on these accounts Rachael shares her journey with her community. “My alopecia Instagram and YouTube has completely turned my confidence levels around. This time last year I couldn’t even look at myself in the mirror and now I am sharing bald and make up free selfies! I got to a point I found that I was hiding myself away and only going out if I had to – By sharing my story on Instagram it has given me the confidence to accept myself and I am helping others in similar situations which is fantastic!”

Rachael has three young children, you would imagine it would be difficult for them to understand the concept of alopecia, but the way in which Rachael educates them on it is so refreshing. She always thought it would be hard for her 11 year old as he was 9 when she first started wearing wigs, but she says that he has been so good with it all. “His attitude from the start has been fantastic and I hope that I have instilled in him that you should never judge someone on their appearance,” “My younger 2 have only really ever known me as a wig wearer and bald so that again is normal to them. My 3 year old also knows that alopecia is why I have no hair and will quite happily tell you I wear a wig if I turn up in a new one! It wasn’t until in the last year that they have seen me without a wig on, I talk to them a lot about hair loss and share stories of other children and adults in similar situations. The most important thing is awareness and making it normal.”

There is a lot of help out there for anybody with alopecia, Rachael really recommends the charitable organisation, Alopecia UK. She says that their Facebook page and website have been a life saver for her, “it is full of advice and support from individuals that are also experiencing hair loss. They hold fundraisers, events, meet ups, support groups and much more.”

I asked Rachael whether or not there are any current medical studies that could potentially aid in hair growth, ” I have heard of some studies that seem to be successful but in reality it will take years for them to develop and see if there are any long term effects for certain drugs before making them available. Alopecia isn’t life threatening so I fully understand why there is much more funding and research for something that is life threatening.”

At this moment in time I have no desire for my hair to grow back. I do not think anyone should pin their hopes on a miracle cure, We need to learn to love ourselves with or without hair and be happy. Losing my hair again would be far worse than staying bald”

Rachael has some advice for anybody who may be newly diagnosed with alopecia or anybody who may have had it for a while: “Get online and speak to others in the same situation. It’s so easy to shut yourself away convincing yourself you are the only one but you are not alone! No matter how little or much, hair loss is still hair loss and it really is a hard thing to go through especially on your own.”

Hair does not define us, and Rachael is a beacon of light – she really is. Proving you do not need to have hair to be beautiful, Rachael’s beauty shines through in anything and everything she does. Inspiring people on a daily basis, and raising awareness of alopecia, Rachael’s journey is helping others, and we should all feel inspired and empowered.

Sub-Edited by Callum Raines

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June 2024