**Disclaimer – this blog represents my own personal opinions and views and should not be interpreted as medical advice. Please consult your GP or Dermatology specialist for any personal medical advice regarding your hair loss.
If you are reading this blog, chances are that you or someone close to you is experiencing hair loss and seeking support. I have been living with Alopecia Areata for more than 25 years, and during this time, it has become increasingly evident to me that there is a significant lack of understanding and awareness surrounding this condition.
Being diagnosed with Alopecia Areata can be extremely overwhelming. However, rest assured, you are not alone. By gaining the right knowledge and support, managing your hair loss can become more achievable. I strongly believe that knowledge is power, and the more you understand about your hair loss, the better equipped you are to advocate for yourself.
This week, we will delve into the fundamentals of Alopecia Areata. My aim is that by the end of this, you will feel more informed and empowered, whether you are personally affected or supporting someone else.
So, grab a cup of tea (preferably Yorkshire tea), and let’s get started...
What is Alopecia Areata?
Broken down into its simplest form Alopecia means “hair loss” and Areata means “patchy”.
Alopecia Areata is a specific type of hair loss. There are lots of other types of Alopecia (for example, Androgenetic Alopecia and Frontal Fibrosing Alopecia). There are also other medical conditions (e.g., thyroid issues) and treatments (e.g., certain chemotherapy drugs) which can cause hair loss.
To begin with, my blogs will largely focus on Alopecia Areata as a cause of hair loss because this has been my experience. However, some of the content will apply more broadly to other types of hair loss.
Why does my hair fall out?
The process by which Alopecia Areata causes your hair to fall out is related to your immune system. The usual purpose of your immune system is to help protect you from acquiring infections in the first place as well as fighting off any infections that do make it through your defences. If your body identifies an infection, your immune system will launch an attack against it and, hopefully, get rid of it.
Alopecia Areata is thought to be an “autoimmune condition”. This means that your body’s activated immune system is attacking itself in a similar way in which it would attack an infection. With Alopecia Areata, your body is misdirecting this attack against your hair follicles (little holes in the skin where hair grows from). The exact causes and triggers for this attack are not fully understood. This is an area where research is ongoing in order to better understand Alopecia Areata.
Lymphocytes are a type of white blood cell that form part of your immune system. Alopecia Areata involves an interaction between these lymphocytes and the hair follicles. The lymphocytes gather around the hair follicles and cause inflammation. This inflammation causes the hairs to enter the “telogen” or “hair loss” phase of their growth cycle. Once the hairs are in the “telogen” phase, they will fall out.
How does Alopecia Areata affect other parts of the body?
As described above, Alopecia Areata is a result of your body attacking your hair follicles. In some cases, this is not just restricted to the hair follicles on the scalp. It can affect the hair follicles anywhere on your body. It can also include eyelashes, eyebrows, facial hair (including nasal hair), and body hair (including pubic hair).
How common is Alopecia Areata?
A recent study conducted in the UK by Harries et al. suggested that, at any one time, approximately 0.6% of the population will have experienced Alopecia Areata of any severity. This would equate to around 400,000 people in the UK. Of the overall number of people affected with Alopecia Areata, it is estimated that around 15 to 30% will have a more severe form of Alopecia Areata (e.g., Alopecia Totalis and Alopecia Universalis – see below).
Alopecia Areata can affect women and men of any age. The same UK study by Harries et al. found that Alopecia Areata was more common in younger adults, particularly those aged 25 to 29 years, and was slightly more common in females. It also found that people from non-white ethnic backgrounds were more commonly affected, particularly those from South Asian and Black communities.
What causes Alopecia Areata?
Currently, the exact answer to this is not known. It is thought that in some cases there may be an underlying predisposition to having Alopecia Areata. There may also be various “triggers” which activate the Alopecia Areata in those who have a predisposition. These factors are likely to vary from person to person and not everyone will have all of the factors.
Possible causes and triggers that have been identified within research include:
Genetic factors
o There is a genetic predisposition to Alopecia Areata.
o Around 1 in 5 people with Alopecia Areata will have a family member who also has the condition.
o There are multiple different genes that have been identified as having an association with Alopecia Areata and not all of these genes are needed to cause the disease.
o Some of the genes are the same as those identified in other autoimmune conditions (e.g., Crohn’s disease) which might be why we are susceptible to other autoimmune diseases.
Environmental factors
o Infections
o Allergies – there is thought to be an association with people who have Alopecia Areata having more “atopic” conditions including eczema, asthma, rhinitis and food allergies.
o Diet
o Exposure to certain chemicals
o Microbes in the gut and skin
Stress
o Severe shock or very stressful/traumatic life event
o Chronic stress over a long period of time
Hormones
o Women – oestrogen levels e.g., during menopause or pregnancy
o Men – testosterone levels e.g., reduced levels with increasing age
For me, I definitely have a genetic predisposition. My sister has Alopecia Areata and it is thought that my paternal great aunt may also have had it. It’s difficult to know exactly but I think that periods where my hair loss have got worse have been associated with more stressful periods of my life. When my hair loss developed into Alopecia Universalis, I had a lot of stuff going on including training for a marathon and completing my PhD. I also thought I might have had COVID just before this bout of hair loss and wondered if there could be some connection there.
What are the different types of Alopecia Areata?
One thing that confused me for ages, was the naming of the types of hair loss and which were considered to be Alopecia Areata. Alopecia Areata is the umbrella term for a spectrum of hair loss for which the underlying cause is inflammation secondary to a presumed autoimmune process.
There are seven distinct types of Alopecia Areata which are categorised according to the pattern and severity of hair loss. It’s important to note that hair loss does not always fall exactly into a distinct category, and you may find yourself sitting between two different types.
Personally, my Alopecia Areata began as the patchy type and has always seemed to have a predisposition to Ophiasis pattern. Even now, on treatment, my temples and behind my ears are the most stubborn areas and I still have patches of hair loss here. My Alopecia Areata developed into Alopecia Totalis when I was around 30/31 years old. I then had a period of about 2.5 years of spontaneous regrowth. It then further progressed to Alopecia Universalis when I was about 33. I have therefore sequentially worked through 1 and 2, 6 and then 7 below.
1. Patchy = round or oval patches of hair loss on the scalp or other parts of the body. These can vary in number and size.
2. Ophiasis = hair loss in a specific pattern around the “edges” of the scalp so that hair is lost behind the ears and at the back of the scalp above the neck.
3. Sisaipho = hair loss in a specific pattern at the front of the head which can include the eyebrows.
4. Diffuse = thinning of the hair all over the scalp, rather than hair loss in patches.
5. Barbae = hair loss involving facial hair.
6. Totalis = loss of hair from the whole scalp.
7. Universalis = loss of hair from the whole scalp, face, and entire body.
Is the hair loss permanent?
No. With Alopecia Areata, there is no scarring or permanent damage to the hair follicles. The severity of hair loss varies from person to person. Hair can regrow on its own without any treatment. Generally, this is more likely to happen if the initial extent of hair loss was less severe. People with Alopecia Totalis or Alopecia Universalis are less likely to experience spontaneous regrowth (e.g., regrowth without treatment).
Unfortunately, once you have had hair loss from Alopecia Areata, there may be further ongoing episodes of hair loss in the future. One of the most difficult things to manage with Alopecia Areata is how variable and unpredictable it can be.
Is Alopecia Areata contagious?
No. You cannot pass Alopecia Areata on to other people.
I was quite surprised when I saw that this was a not uncommon concern about Alopecia Areata. Only recently, I saw a social media post from a very inspiring lady with Alopecia Areata who had been at the airport and had received some comments from members of the public along the lines of “stay away from me, you’re disgusting”. It horrifies me that someone would ever have to experience this. Unfortunately, I think this type of response stems from a real lack of understanding about the condition.
I hope you found this blog helpful. Please do provide feedback so that I can write blogs that you find helpful. Also do follow me on Instagram for more content.
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