September is Alopecia Awareness Month and for those who follow me that do not know what alopecia is, alopecia means the loss of hair. There are different types of alopecia that can cause temporary or permanent, total or partial hair loss, including that of the body and not just the head. I suffer from androgenic alopecia myself which is the gradual thinning of the part line followed by an increasing loss of hair from the top of the head. I’ve compiled a list with links to resources and stores if you’re interested, you can click here to find it.
My own hair loss started in my late teens after corneal transplant surgery and I have struggled with this for years since. However, it wasn’t until 2019, when I was looking at some photos taken at a wedding with my husband, that I came to realise how much hair I had lost.
The following months were a dark place for me and I ended up feeling lost and alone. I didn’t start climbing out of it until I became aware of the hair loss community, through browsing Reddit that led me to YouTube, which then finally led me to Instagram, and I began to see that I was not alone. And you shouldn’t feel alone either!
Since discovering this wonderful community and embracing the fantastic support from those within, I have felt empowered to stand tall and not worry so much about my hair loss. We are not defined by our hair, but by what is on the inside. We are more than our hair.
I still have my bad days, like anyone, but without knowing about this community I would still be in that dark place. That is why I want to do everything I can to spread awareness, to show kindness, to share positivity and spread support to all in the community and beyond.
I would encourage anyone that feels like they are in that dark place to reach out, whether it’s to me, to a friend, to a family member or anyone else in this community – please reach out as you are not alone! If you feel that now is not the right time to do that, then that is fine too! Everyone’s experience and story with hair loss is different and personal to them.
Alopecia UK is a small charity that is working hard to improve the lives of those affected by alopecia. As most of us know, hair loss is not just physical but the emotional impact can run much deeper. The charity has aims around support, awareness and research.
Back when Alopecia UK turned 15, I did fifteen different challenges across the month to raise money for them, documented here and on Instagram.
Alopecia UK relies on the support of fundraisers and donors to continue the fantastic work it does so if you are able to help support this then please visit the link below. If you’re unable to donate then that is fine! All I would ask is for you to please continue to spread awareness of alopecia so we can continue to embrace people into our community.
Visit Alopecia UK to find out more and support their work.
The types of alopecia
Like I said up top, alopecia just means hair loss, and that’s the bit that trips everyone up. It’s an umbrella word rather than a diagnosis, so somebody can tell you they have alopecia and you’re still none the wiser about what is actually happening to them. Here are the ones you’ll come across most often. I’m not a doctor and none of this is medical advice, it’s the plain English version I wish somebody had handed me at the start.
Androgenic alopecia
This is mine. Female pattern hair loss and male pattern hair loss are the same condition under different names. It comes from a genetic sensitivity to DHT and it moves slowly: the parting widens first, then the top thins out, and in women the front hairline usually stays where it is. Mine started in my late teens after corneal transplant surgery and I spent years not really admitting it was happening.
Alopecia areata
The patchy one. It’s autoimmune, so the body turns on its own hair follicles, and it tends to show up as smooth round bald patches that can appear over a few weeks. The unpredictability is the hard part. Hair can grow back on its own and then let go somewhere else entirely.
Alopecia totalis and alopecia universalis
Both are areata gone further. Totalis is the loss of all the hair on the scalp. Universalis is all the hair on the body, so eyebrows and lashes go too.
Traction alopecia
Caused by pulling rather than by anything going on inside. Tight ponytails, braids, extensions, weaves, and yes, topper clips sat in the same spot on your head every single day. It’s the one type on this list that’s largely preventable, which is why anybody wearing alternative hair should keep half an eye on it. I’ve written about that side of it properly in do hair toppers damage your hair.
Telogen effluvium
Shedding rather than thinning. Something shocks the the system, illness, surgery, childbirth, serious stress, a crash diet, and then a few months later a lot of hair lets go at once. The delay is what catches people out, because by the time it starts falling the thing that caused it is long finished. It usually recovers.
Scarring alopecias
Frontal fibrosing alopecia and central centrifugal cicatricial alopecia are the two names you’ll see most. Inflammation damages the follicle and leaves scar tissue behind, so the loss is permanent. These are the ones where getting in front of a dermatologist early genuinely changes what happens next, so if your hairline is going back in a band, or you’ve got a patch that’s spreading and feels sore, get it looked at rather than waiting to see what it does.
FAQ
When is Alopecia Awareness Month?
Alopecia Awareness Month is in September each year. It’s used to raise awareness about different types of alopecia, reduce stigma, and connect people with support and resources.
What is alopecia?
Alopecia is the medical term for hair loss. There are several types including androgenic alopecia (female or male pattern hair loss), alopecia areata (patchy loss often linked to the immune system), alopecia totalis (complete scalp hair loss), and alopecia universalis (complete body hair loss). Each type has different causes, patterns, and treatment options.
What support is available for people with alopecia in the UK?
Alopecia UK is the main charity here. They do information on the different types, support groups online and in person, and resources for navigating it, and their website is alopecia.org.uk. Honestly though, the thing that got me out of the dark place was the online community rather than anything official. Reddit led me to YouTube, which led me to Instagram, and that’s where I stopped feeling like the only one. All three are still worth your time.
Is androgenic alopecia the same as alopecia areata?
No. Androgenic alopecia (female or male pattern hair loss) is caused by a genetic sensitivity to DHT and causes progressive thinning in a predictable pattern. Alopecia areata is an autoimmune condition that causes patchy hair loss that can be unpredictable. They have different causes and different treatment approaches.
Does hair grow back with alopecia?
Depends which type you’ve got, which is exactly why the label matters so much. Telogen effluvium usually sorts itself out. Areata is the unpredictable one, it can grow back and then go again somewhere else. With androgenic you’re slowing it down rather than reversing it, and with the scarring alopecias the follicle is gone, so there’s nothing left for hair to come back from. Nobody can tell you which one you have off a photo, so a real diagnosis is worth waiting for an appointment over.
How can I support Alopecia Awareness Month?
You don’t have to fundraise for it to count. Share something, or correct someone who assumes alopecia just means going bald in patches. Honestly, not commenting on a friend’s hair does more good than people realise. If you want to give money, Alopecia UK is the one I’d point you at. And if there’s someone in your life going through it and you’re not sure what to say, Elle’s guest post on the golden rules for supporting someone with alopecia is the most useful thing on this whole site for that.
More on alopecia and hair loss
- Androgenic Alopecia in Women: What It Is, What to Expect and What Helps
- Nobody Talks About What Hair Loss Does To Your Head (The Inside Part)
- What I’d Google If I Was Newly Diagnosed With Androgenic Alopecia
- The Golden Rules for Supporting Someone With Alopecia
- Hair Loss Resources UK
- Fundraising for Alopecia UK
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