Alopecia areata is the most common auto-immune disease in the world, yet so many people have not heard of it. It can effect anyone and can occur at any time in life. Alopecia areata is an auto-immune disease that causes patches of hair to fall out from the scalp and body, which can happen as fast as overnight. September is Alopecia Awareness Month and I want to talk about it as, it's something close to my heart.
What is Alopecia Areata?
Alopecia areata is an autoimmune reaction where the body's immune system incorrectly attacks its own cells - the hair follicles. As a result, the hair falls out. This can lead to alopecia areata totalis or universalis which results in total hair loss on the head, and total hair loss on the head and body respectively, including eyelashes and eyebrows. Although the genetic basis of alopecia areata is mostly unknown, medical professionals believe it is triggered by an interaction between multiple genes as opposed to a mutation in a single gene. This suggests alopecia areata is inherited from a parent, even though the gene may be dormant in them. Some doctors also believe it is impacted by environmental factors as the disease can come and go throughout life, while your genes are with you from birth. Others believe it is brought on by stress, although there isn't enough medical evidence to support this.
Alopecia Areata Symptoms
Alopecia areata has no other symptoms but round patches of hair loss. It is not a physically disabling disease, but an emotionally challenging one. The exposed scalp is mostly smooth and normal. Some people can experience tingling, itching or burning on the bald spot. More bald spots can appear over time leading to AA totalis or universalis, or there may only be one patch that eventually grows back. Alopecia areata is highly unpredictable as it can come or return at any time, which makes it harder to accept and have control over.
Alopecia Areata Treatment
There has been little progress with medical treatment, with no permanent cure for alopecia areata. Dermatologists recommend corticosteroid injections given directly onto the bald spots to suppress the immune reaction by stopping the white blood cells from attacking the hair follicle. This is an effective way to allow hair regrowth, but is not permanent and has side effects. Often only a percentage of the hair comes back, or the hair grows a little before falling out again. Corticosteroids are only effective on mild cases and not alopecia areata totalis or universalis. Many people with severe AA turn to wigs or headscarves for a long term solution.
My Alopecia Story
A couple of years back, while massaging my scalp, I felt something fleshy. Not knowing what I was feeling, I was perplexed. I was at the office and had a barre class right after work, and was determined not to use this as an excuse to cancel it. So, I went to my class but all I could think about was that. As soon as my class ended, I cycled home so fast to check in the bathroom mirrors. My jaw dropped and tears rolled down my face. It was a perfectly round one euro coin-sized bald spot under the bulk of my hair.
Within minutes I figured out that this was alopecia areata, and my doctor confirmed it a few days later. I was scared because of how variable the disease is. I didn't know if I would lose all my hair by the end of the week, or if it would be a one-off spot. My doctor couldn't tell me either and searching online, I only read about severe cases. I began obsessing over my hair loss in so many ways that were not healthy for my mental health.
Treatments I Tried To Help My Alopecia Areata
My doctor referred me to a dermatologist who suggested corticosteroids. I was reluctant but I proceeded with the treatment. I would get around six to nine injections at the back of my head on the bald spot, every month. The only side effect I had was an atrophy, also known as a 'dimple' or 'depression' where the steroids were injected. This area became flat and felt like a dent in my head as the steroid affects the collagen and elastin under the skin. With the injections, approximately 60% of the hair began growing back, and fast. It grew to around three inches in two months. My dermatologist reduced the frequency of my visits to every three months as he was seeing progress. When the treatment frequency reduced, the hair fell out again from the spot, leaving around 5%. My treatments increased and as a result, the hair came back - a pattern was emerging. I reduced my visits one more time before completely stopping due to COVID-19. My last appointment was meant to be in March 2020 but was cancelled due to the outbreak. I was supposed to rebook but I haven't since as I personally don't wish to continue having corticosteroids in my system and didn't see the benefit.
When I underwent the corticosteroids treatment, I simultaneously turned to homeopathy, as well. Homeopathy is an alternative treatment based on the use of highly diluted substances, which homeopaths believe cause the body to heal itself. My homeopath conducted an on-boarding session with me, which was more like therapy. She believed that a series of events in my life piled up and one factor (still unknown to me) was the straw that broke the camel's back, and caused my body to attack itself as a reaction. Every two weeks, I would see my homeopath who would give me a pill that I let dissolve under my tongue - often deemed as the placebo effect by skeptics. My homeopath urged me to stop the corticosteroid treatment as she didn't believe it works and even said the injections will counteract the homeopathy treatment. My dermatologist persuaded me homeopathy was scientifically implausible and that I should stop. In the end I stopped homeopathy after eight months as I didn't believe it enough to pursue, and wasn't seeing results.
SUPPLEMENTS, HAIR CARE & DIET
During this time, I also began taking supplements in rotation - zinc, magnesium and biotin to promote hair growth. Along with this, I would give myself a scalp massage with caster oil and coconut oil once a week, and washing my hair no more than twice a week. I used Nioxin shampoo and conditioner, which is specifically developed for thinning hair. I also began applying lavender and rosemary oil directly on the bald patch to stimulate hair growth, determined to try everything. The other drastic change I made was my diet. I switched to the Autoimmune Protocol diet (AIP) which meant cutting out an extensive list of foods to prevent inflammation and autoimmune reactions.
Where I Am Now
Fortunately, all of the hair has come back on its own over the past six months since stopping the steroid injections. I continue to take supplements in rotation, oil my hair and wash it once to twice a week. I no longer use any specific shampoo or conditioner (only sulfate free) and do not follow any diet, except for eating mostly healthy. I also made positive changes to my professional career, that reduced a lot of stress. I do still worry about the alopecia returning in the future, but I do not let it weigh me down. I invest in a lot of self care for my mind and body, and try to keep stress levels low. I truly believe that my AA was stress induced, so this is extra important to me.
Why I Want To Talk About It
I want to talk about alopecia to create awareness for this disease and the need for a cure. Alopecia Awareness Month is a way to share my story so you, my community, can understand alopecia areata better. I want to use my platform for those who are suffering from alopecia and find it hard to talk about. I have struggled to share this post and let it sit as a draft for so long, but it needs to be normalized and spoken about. I also share for that person who has just discovered their first bald spot, searching for answers - because I've been there.
It was hard finding stories that did not result in totalis or universalis. This scared me and made me believe that all alopecia results in total hair loss, as that was all I saw. I questioned why people of all severities were not more vocal about alopecia areata, especially as it's the most common autoimmune disease. I realized many people feel embarrassed to talk about it, and prefer concealing it with camouflage cosmetics and hair styling - I have too. People that often find one or two patches, like to forget about it once the hair grows back. But if milder cases are not spoken of, then the assumption becomes alopecia is total hair loss, which is incorrect.
What You Can Do
Losing hair can be devastating. It's often part of our identity and unfortunately so many beauty standards are based on hair. If you would like to help, there are a number of things you can do. Human connection is one of the most powerful tools you have to fight health conditions. Educate yourself on what alopecia is, and talk about it with your friends and family to spread awareness and show support. If you are able to, contribute to your national Alopecia organization who will use your donation to continue research and awareness. And lastly, be kind to each other.