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Androgenetic Alopecia - My Journey.

I first started losing my hair at around the age of 12 or 13. I didn't pay attention to it then. I was more preoccupied with the seborhheic Dermatitis that was not going away, despite having tried all sorts of medicines, treatments, and visiting doctors in several cities. It would fall out in my daily hair brush. I would see hair falling out when I would be walking around my room, or waking up from sleep.

I felt too ashamed to even discuss it at home. I was admonished from the very beginning about the fact that I was losing hair. According to my mother, I was losing my hair intentionally. I had purposefully pulled out my own hair.

That was not true. I was dealing with trichotillomania, a form of obsessive compulsive disorder. This was a consequence of severe folliculitis, and seborhheic Dermatitis. I had an extremely scaly, itchy scalp, that would remain this way and it gave me the compulsive urge to pick at my scalp. This would cause me to remove my own hair, when I would pick at the scales on my scalp.

Eventually, I was also diagnosed with polycystic ovarian syndrome. I suffered from hyperandrogenism, and this caused my hair to continue to fall out. I lost hair at my forehead, and the front of my head. These were in large amounts, creating visible bald spots on my forehead.

I have since begun to understand my condition and also look for solutions. However, I experience judgment from relatives and colleagues, because of the amount of stigma attached to alopecia.

Alopecia is often blamed on the person with the condition. Present day beauty standards stigmatize alopecia, especially among women. Advertisements, television and film programmes, and print magazines all focus on maintaining a beauty standard of a head full of thick, luscious hair - even if it is digitally edited, or created using wigs, hair systems, or transplants.

I felt deeply ashamed for my alopecia for years. It made me feel as if I was not good enough to be around other people. I began to obsess over the kind of transplants, wigs, or hair systems I could wear on top. I would look at other individuals without alopecia, and obsessively compare myself to them.

Alopecia is not something to be ashamed of. It does not make you less of a person. It is a common condition, and deserves to be accepted in society. We need to challenge our prevailing beauty standards, and the gendering of hair on the human head, to enable people with alopecia to live lives with dignity.



Being blessed with having Down’s syndrome in your life , this is Noah age 7 who rocks the extra chromosome and his 2 year old brother bobby

I just feel so blessed to have been lucky enough to be living this journey with Noah and it makes his siblings macey and Noah and cousins aware of Down’s syndrome, at the moment Noah is Noah and Noah always will be Noah in our friends and family’s life’s but there is a lot of ignorant people out there and Noah will never ever be made to feel any different, and he’s absolutely rocking his alopecia 💙💛 #DownsSyndrome #Alopecia #Siblings #loveourjourney

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The Autumn Of My Years

Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

So now I am in the literal autumn of my years.

The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

There are things I can tell you though.

I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

As I fixated on my hair loss, I learned many things.

I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

But I can tell you how I feel.

I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

And I do not know when it will be spring again.

But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

#HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

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I feel so lost… 😔

It’s been a while since I posted anything, not because I haven’t missed you all (because I have), but because I have had so many thoughts racing around my mind that I didn’t know where to begin. I feel like I’m lost in the midst of all the stress and chaos that is swirling around in my head. I’m actually so stressed that I have developed ‘Telegon Effevium’ - stress related alopecia - which is, ironically, also stressing me out. 🤦🏻‍♀️💔 I feel like I have so much going on in my head that I have lost the person I used to be, and I really don’t like the person that it’s turning me into. I want to re-discover the ‘me’ that I like being, the ‘me’ that I used to be before my life was turned upside down (which I will post more about later). The problem is, I just don’t know where to begin… 😔🥺💔
#CheckInWithMe #CheerMeOn #MightyTogether #MentalHealth #Anxiety #Depression #Disability #FunctionalNeurologicalDisorder #FND #ChronicIllness #ChronicPain #Grief #SpoonieProblems #TelegonEffevium #HairLoss #Alopecia #LostInTheChaos #JointHypermobilitySyndrome #JHS


I Am Worthy Because I Have Alopecia.

I am worthy because I have alopecia. Alopecia causes me to lose a lot of hair from my head very quickly. I am worthy because alopecia is not who I am. It’s a condition I have.

Alopecia defines me as much as the color of your house’s roof defines you. In short, it doesn’t. Alopecia is a condition which is surprisingly common, but is treated with a tremendous amount of internalised and externalised gender bias.

Androgenic alopecia is normalised, but feminine alopecia is not. A man can walk into an office without a strand of hair on his head, but if a woman were to do the same, she would be faced with questions and comments. Why the double standards and hypocrisy?

I’ve found that in many, many cases of gender bias towards alopecia, the woman is usually a target of questions about her health. Whereas a man is usually accepted for having alopecia, regardless of the severity, despite there being an almost equal impact of it on men as it does on women physically.

The worst part of the gender bias is the normalisation of the consequences of alopecia, and the demonisation of the consequences of alopecia for men and women respectively. Men are told that they can still have careers, relationships and active lifestyles despite their symptoms or the severity of their alopecia. Women are made to believe that their ability to seek a career, build relationships and have an active lifestyle is restricted because of their alopecia.

In understanding the gender bias between men and women, we begin to see where the roots of the stigma of alopecia truly come from. It’s hardly the condition itself which is creating such a struggle for sufferers, but the biased and often misogynistic myths surrounding it, which generate far more distress than the symptoms themselves at times.

This is why I choose myself and my worth over a false narrative. I am worthy despite my alopecia and because of it, because I am not deserving of any contempt for having alopecia symptoms. If anything, it is a sign that alopecia itself is something that our society needs to work on either accepting or curing completely, instead of condemning persons with symptoms.

I am worthy and I have alopecia. I am building the highway towards authentic self worth and self empowerment. #AlopeciaAreata #Alopecia #PostchemotherapyAlopecia


Anyone else dealing with premature baldness?

It's been having a pretty big impact on my mental health for some time now, and the other day I shaved my head since I figure the stress caused by trying to hide it ain't gonna get any better, but maybe I can come to terms with this eventually.

As a side note, my formerly glorious hair was a pretty huge part of my identity. I don't look quite as terrible as I expected with a shaved head, but still. It's not ideal.
#Selfimage #HairLoss #Anxiety #Alopecia


Alopecia? #Fibromyalgia #Alopecia

I was diagnosed with fibro about 5 years ago. I've recently noticed that I'm getting some alopecia. I have lost patches of hair from the tops of my forearms (I have always had a lot of super dark body hair, so this is noticeable), more recently on my shins, and I have also noticed that my eye brow hairs seem to be coming out more than one would think and are getting thin.

Curious to see if anyone else has had this symptom with their conditions? I don't take any medications.

I've learned so much from this group. I know fibro isn't the end of my story. I've been tested for the following:

HLA B24 - positive
ANA - Negative
Fibro - Positive
Lyme - Negative
Sjogren's - Negative
RA - Negative
AS - Negative (but only had x-rays)
Vitamin B - 5 (supplements for that)
Thyroid - Low normal
Hormones - Low normal
Iron - Low normal

I know there's more, but I can't think of them at the moment.

Thanks in advance!