As I explained at the end of my last post. I want to share other’s stories with you. This one comes from Yusuf, a business owner from London who wanted to share his alopecia journey. I’m sure you will enjoy reading it as much as I did.
When I was 34….
It all started in 2015 well, June 23rd 2015 to be precise, a date imprinted in my memory and my iCal (more on that in a bit).
I woke up one morning with a semi-circle missing on my left eyebrow, at the time I didn’t think much of it, I just went about my day, telling myself nobody would notice and indeed, nobody did.
About a week later, semi-circle still there I found myself on google (they say the devil makes work for idle hands!)
“over night bald patch”, “eyebrow suddenly fell out”, “why is my eyebrow falling out?” were some of the searches I typed in. While many reasons came back there was one that kept on appearing: Alopecia Areata. “What?!”, ok more specifically: “What on earth is that?!”
So that was the next fateful search.
Imagine a Hollywood film, the slow motion typing, the dubbed clicking sound and then the inevitable search results. With it my heart sank…. The first results came from sites like NAAF…. “An Autoimmune condition, Some people lose some hair, others lose all their hair including body hair” “Some”?? “Others”?? I’m a computer scientist! I need statistics, I need figures, and I desperately was not getting these from NAAF.
My next port of call was Alopecia World Forums and that was when it really began to sink in, and with it depression and anxiety. I tried to bargain with myself, I have no other patches, nothing on my scalp, it can’t be alopecia areata, I don’t want to lose all my hair.
I mentioned my iCal earlier, because as well as inputting the day I first noticed the eyebrow, I started more inputs: Predicting the day more patches would fall out in line with what I read from stories in Alopecia World.
I entered what could only be described as grieving, didn’t want to know anything from my wife, my young son, my business, my krav maga group – basically anything that gave me any fulfilment in life.
Instead I found myself shut away, constantly google searching people’s alopecia stories, and they all seemed have a version of “It started off as a patch and quickly turned into AU (Alopecia Universalis …. where you have zero hair anywhere on your body)
Doctoring the facts
I was scared to go to the doctor as I didn’t want my self-diagnosis confirmed, but I was dragged along by my wife….
He looked at my eyebrow and examined my patch free scalp and look puzzled, his exact words were “It could be fungal, it could be alopecia areata, my working diagnoses is alopecia areata…”
My first thought “Why is he so calm about this?! I’m about to lose ALL my hair” I vocalised this immediately to him. He looked at me with a puzzled expression
“This maybe as bad as it gets”
I wasn’t listening…. I persisted: “I go online and all I see is that isn’t going to be as bad as it gets, this is the start of AU!!” (I should add he’s a very good doctor in the ‘twilight of his career’)
He very calmly said to me “I’m yet to treat anyone with alopecia areata who’s gone on to lose all their hair”. I wasn’t listening, I left his office in a bit of a depressed daze.
Three months passed and slowly, my eyebrow continued to shed, in a diffuse type fashion. Leaving me with a patch missing in the middle of my left eyebrow (As much as I love scarface, I didn’t love the look one bit!)
Having had no other patches fall out anywhere else I desperately was still looking for a ‘get out’
‘It has to be fungal!’ I kept telling myself, I was in Indonesia a few weeks before this all started I must have some sort of exotic fungus! Back to the doctor I went…
I think more worried about my panicked state than my hairless patch he prescribed my anti fungal pills. I dutifully took them and began to see slight regrowth!
The regrowth was very fine and slow… and it kept my anxiety down for a few weeks, until it came back with a vengeance!
It was now December and I finally decided to visit a dermatologist (looking back now, it was more of a bargaining to myself, regrowth had started so I was hoping it still wasn’t alopecia).
£250 for a consultation, She looked at my eyebrow and said: “There’s regrowth, no exclamation mark hairs, 50/50 fungal or Alopecia Areata” She took fungal swabs which will be back first week of new year.
Convinced it was fungal, I felt happy and left.
The New year came and my results came back: no sign of fungus! By now my eyebrow regrowth was starting to come in, so I put this whole ordeal to the back of my head (not forgotten, just not thought about every moment of the day) .
My eyebrow grew back, no other patches appeared so still not entirely convinced I have Alopecia Areata I just put it down to “one of those things” and moved on with my life.
Alopecia II – the revenge
When I was 36…. September 8th 2017 to be precise, again a date I really should never forget (unless I want to be homeless! It’s my wedding anniversary, and this one was my 5th)
I was in the bath, with my longish locks lathered in shampoo, when my wife walks into the bathroom (I assure you after 5 years of marriage and together for 8 years at this point, this is not going to turn into literotica!)
“Leave me alone! I’m trying to relax” I said “I’ll be quick, just need to get some…… hold on! you have bald patches?!” she exclaimed.
Resting heart rate suddenly went tachycardic… She dutifully took some photos with my phone, I could already see in the preview what was to come… Two bald patches, separated by a CM of hair. One was the size of my thumb print and it’s tiny neighbour (or garden extension as I later referred to it as) about the size of my index fingerprint.
I got out of the bath, and all the feelings that I had two years prior came flooding back…. This isn’t fungal, who was I kidding? this IS ALOPECIA! and this time it’s on my head, last time I got ‘lucky’ this time I’m going to get AU, those were my thoughts. I began to shake.
I had to goto NYC on business the next day, which was by far the worst trip of my life. I love NYC, I Love the USA, I hate having something that follows me.
My bald spots were on the top right side of my head, very easy to hide, I didn’t even need to change my hair style.
That wasn’t the point however, I ‘knew’ I was going to get more, that I was going to be one of those stories I read on alopecia world “I woke up one morning, all my hair was on my pillow….” , “One day I blinked and all my eyelashes came out….”
Dermatology – AGAIN
From NYC I called my dermatologist back in the UK and arranged an appointment for the day I flew back in, no more burying my head in the sand, this is real now.
On the day I visited her, I was a total wreck! she looked at my patches and her words:
“It’s alopecia areata, it will grow back, but it is likely to reoccur in future”
She was so calm about it! I’d heard of “Keep calm and carry on” but this was ridiculous!
So I opened up to her about what I read on alopecia world and various groups. In her perfect Oxford Educated english she looked at me and said “Stay away from patient support groups, if you really want to know about the ‘average’ case then speak to medical professionals”
She gave me a topical steroid cream and told me to apply it twice a day for two months and return. After two months I returned and she was pleased, “You have regrowth and no signs of any other patches!”
It’s been 7 months since that day and while the patches are not completely gone, they have a good amount of regrowth.
A Bit of Background about Yusuf:
Alopecia is his second Autoimmune disease. His first is psoriasis which he has had on and off for over 15 years. It was his psoriasis that let him start thinking more rationally:
Psoriasis is a ‘mild disease’ for 80% of people (official stat!) for me to date it has never been more than a few bits of dry skin here and there. I know two other people with psoriasis, both of which unless you knew they had it, you also wouldn’t know that they did.
I’m also a member of Facebook group called the Psoriasis Association, and if I was a ‘newbie’ to psoriasis I would be petrified. I noticed a pattern most of the posts seem to come from about 2-8% of the same people…. Severe Psoriasis affects 2-8% of patients (coincidence?)
Since the ‘confirmed’ alopecia areata date in 2017 Yusuf decided to delve a bit more into his family history:
- His mum suffers from Autoimmune Thyroid
- He has psoriasis and now Alopecia Areata
- His aunt (mum’s sister) also had Alopecia about 4 times in her life, she developed 2-3 small patches, that grew back. Years passed it would repeat in same pattern
Yusuf’s statistics and hypothesis
Alopecia Areata affects about 2% of the global population at some point in their life, assuming the male to female ratio is 1:1 (ie. equal) this would mean:
- In London (population: 8,788,000) – 175,760 have alopecia areata (either active or in remission)
- If half of them are women: 87,880 women have alopecia areata
This didn’t ring true,
I haven’t seen nearly 90,000 bald women in London, or nearly 90,000 with painted eyebrows, or nearly 90,000 without even the finest of hairs on their ears, arms etc.
So why are there so many AU people?!
he then found this stat:
“Not everyone loses all of the hair on the scalp or body. This happens to about 5 percent of people.”
I started to think, when things are good? do you think about anything else? no! you’re too busy enjoying yourself. It’s only when things are bad that people really need support, (and rightfully so).
It’s the echoes of those times, that you see online.
I hope I haven’t jinxed myself by writing this, I’m just trying to help, especially those newly diagnosed who are likely to find themselves on google like I was.
This condition is entirely unpredictable and I realise that one day I may lose all my hair too. If you’re a newbie and reading this first of all Welcome to the party! (it’s probably a guest list you never wanted to be on!) but also please remember that should I join those who lose all their hair I have become a statistical deviation and not the norm.