Alopecia Areata: What it is and our story of autoimmune hair loss
2 years ago / in Blog
Alopecia Areata is an autoimmune disorder where the immune system mistakenly attacks the hair, causing a condition of partial hair loss.
In this post, I’m going to share my daughter’s story and experience with Alopecia Areata, and what we do to help support her in the first two years of her Alopecia Areata journey.
What is Alopecia Areata: Will your hair grow back?
Alopecia Areata is a type of hair loss condition that happens when our immune system mistakenly attacks our hair follicles, causing damage that is usually not permanent but may result in thinning hair, hair that breaks off, and hair that falls off causing smooth bald patches on the scalp.
In some rare cases, the hair can eventually grow back, however the length of time it takes for ‘recovery’ varies. As hair regrows to fill up existing bald patches, other patches may form on other areas of the scalp.
In some other cases, Alopecia Areata may progress into Alopecia Totalis (total loss of hair on the scalp) or Alopecia Universalis (total loss of hair on scalp and other parts of the body, such as eyebrows and eyelashes).
Because there is no effective treatment for Alopecia Areata or any autoimmune disorders, in many cases, Alopecia Areata remains unresolved and it is not uncommon for someone to continue experiencing partial hair loss for years or even decades on.
Our story of Alopecia Areata
My daughter was born with a full head hair. However, started developing symptoms that would lead to Alopecia Areata when she was about 20 months old.
It was coincidental with the end of a throat infection and a course of antibiotics which was prescribed for her by our doctor because the infection led to persistent high fevers.
None of our doctors could tell us if the antibiotics, the infection, or the fevers have had anything to do with the triggering of this autoimmune disorder.
Alopecia Areata in children
Alopecia Areata is an autoimmune condition, which means that available treatments can only attempt to suppress symptoms, but unable to treat the source. To this day, there is no truly effective treatment or medical cure for any autoimmune disorders, including Alopecia Areata.
When Alopecia Areata occurs in children, safe treatment options are even more limited, especially when you consider the fact that any available medical treatment for Alopecia Areata today is limited in their effectiveness yet come with many possible damaging side effects.
In young children, the impact of Alopecia Areata isn’t much on emotional and social aspects. Therefore, the limited effectiveness of any available treatment aren’t worth the side effects and long term risks on their health.
More importantly, focusing on treatments that can only suppress symptoms at best may also distract you from looking at what’s really wrong with the immune system and looking for a solution that truly builds the immune system for the long term.
Topical steroids are usually the first-line treatment for paediatric cases of Alopecia Areata. The question comes down to whether or not you think that applying steroids on the scalp, so close to a child’s developing brain, for likely ‘improvement’ of the hair loss condition in the form of merely suppressing symptoms and not actually curing the disorder, is worth the risks. For us, it definitely wasn’t.
The timeline of our first two years of Alopecia Areata
Year 1 and early symptoms of Alopecia Areata
The first year was full of the unknowns, surprises, not knowing what to expect, worries, and confusion.
At the time when we started to experience Alopecia Areata early symptoms, we were focused on just recovering from months of on-and-off sickness from daycare, and we were busy watching out for cold and cough symptoms. Her night sleep had also been ruined from all the days when she was unwell, so we were also focused on re-regulating her sleep patterns and getting her sleeping through the night again.
In addition to not having heard about Alopecia Areata before, we didn’t know what to make of the early Alopecia Areata symptoms.
What early symptoms looked like
Looking back, her early symptoms started with her hair becoming brittle, dry and therefore would tangle easily. The overall hair texture became visibly thinner and would break or fall off easily. Bald patches all over scalp started to form, starting with receding hair lines around the face.
First consultation with family doctor and blood tests
Our family doctor ordered a set of blood tests to include biochemistry, endocrinology, gastroenterology and nutrition, as well as haematology. Everything came back normal and there was no deficiency in any of the nutrition tested. Nothing obvious was found to suggest cause for the hair loss.
Specialist consultation and diagnosis of Alopecia Areata
7 months after initial consultation with the family doctor, we saw a paediatric dermatologist (Specialist Doctor) at Royal Children’s Hospital in Melbourne, where we lived at the time. After thorough examination, the specialist gave us a diagnosis of the hair loss being autoimmune Alopecia Areata.
We did not do any autoimmune tests to confirm the autoimmunity, and were not prescribed those tests by the specialist either.
The Specialist’s report for our consultation stated that “there was patchy hair loss over top of head, with hair being generally of thin quality, patches of regrowth seen in patches of hair loss. Exclamation mark hairs were seen at margins of hair loss, and some anagen hairs were removed from her head.”
A 360º medical photography was done by the hospital to document areas of hair loss so that we could review and compare in the following consultation.
The Specialist wrote us a prescription for Minoxidil and Elocone, but made very clear that these will not cure the condition, and that any expected improvement would only be symptomatic. He also said that the degree of hair regrowth that may result from these medications would depend on the body’s own ability to regrow the hair.
We decided to skip these medicines. Instead, I did my homework, reading books and scouring papers, medical journals, and the web in general to come up with a list of natural ways to nourish her scalp and her body in general to encourage hair growth.
During the first year, we experienced ups and downs, one step forward two steps back, as things would sometimes seem to have gotten better and other times the opposite. It was quite the roller coaster ride.
Year 2 and the difference 12 months made
While I had read over the web in the early days that it takes 6 months to a year for most people to ‘recover’ from Alopecia Areata, by the end of year 1 I realised that Alopecia Areata wasn’t just going to miraculously go away.
The beginning of year 2 was our lowest point yet. She lost most of her hair, leaving huge bald patch right on the top and left areas, as well as very thin hair covering everywhere else. Needless to say, we felt helpless and worried.
Although Alopecia doesn’t hurt her physically, the frustration and worries also motivated me to look harder for what we could do to help her system recover from this.
Toward the middle of year 2, we started seeing the biggest improvement we’d ever seen yet. And by the end of year 2, most of her hair grew back. There is a small patch at the back which is already seeing encouraging regrowth. Overall texture also improved tremendously.
She still had less hair than most children her age, and patches of hair loss could still form from time to time. However, it was encouraging to know that it is possible to get better from Alopecia Areata even without steroid treatments, if you put the effort into building the immune system.
SC | Winning Alopecia
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