Teen Let Down by Lack of Information on Alopecia Areata Causes

Put a group of former soldiers in a room and talk will quickly settle into familiar territory that might include war stories and gripes about equipment. Put a group of people with Alopecia Areata together, and the most likely topic of conversation will be their collective confusion about this autoimmune disorder and the patchy hair loss it leads to.

Utter bewilderment about the condition certainly describes Swindon-based teen Chloe Ellen’s experience of life with Alopecia Areata. Having first started losing her hair when she was seven, she has been mostly completely bald for the following 12 years. And even now, she is as perplexed by the disorder as ever.

"It doesn't make sense to me," she told her local newspaper, the Swindon Advertiser. “I would accept it more if I knew why (it happened) but no-one can tell me why.”

Vexing condition

Chloe’s experience is pretty typical. Alopecia Areata is a vexing condition that is still not fully grasped by the medical community. While it is better understood than ever before, doctors often struggle to explain exactly why a patient's hair is falling out. What is suspected is that there are a number of “triggers” that can cause Alopecia Areata, but people with the condition often can’t see how these triggers apply to them. In Chloe’s case, it is the word “stress” that has left her baffled.

“There were about 30 of them,” says Chloe, as she explains how a group of doctors lined up to examine her bald patches when she first went to the hospital as a seven-year-old. “They said it could have been caused by stress. But if there’s one thing I didn't have it was a stressful childhood. I had a fantastic upbringing. The only trauma in my life was losing my hair."

Autoimmune disorders happen as a result of the body thinking it is being invaded by foreign cells, and stress is frequently named as a likely culprit. Many people find themselves bewildered by the explanation, however, especially if like Chloe life seemed to have been ticking along nicely.

What is possible is that Chloe was stressed in some other way a way which she didn’t even realise. “Stress” does not always mean emotional it can mean physical, too, triggered, for instance, by an illness or infection. It can also be triggered by allergies and hormones. Even so, it is understandable that Chloe has found it impossible to put her finger on what could have caused her hair loss. That feeling of confusion is extremely common.

Chloe was talking to the newspaper to try and raise awareness for a GoFundMe campaign that she has started in order to try and raise almost £4,000 for a bespoke wig. She tells the newspaper that has has tried everything from cheap wigs to more expensive ones costing £300, but says they have all been horrendous and itchy to wear.

“The one I’ve found is perfect because it’s light and comfortable,” she tells the Advertiser. “I can just slip it on and wear it under the shower so it would feel like real hair. I would love to have one. It would make a really big difference."

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Some forms of alopecia can be treated

While a tailor-made alopecia areata treatment course can often produce significant regrowth results for those with patchy hair loss, the chances of success would be extremely low in Chloe’s case.

She explains how her eyelashes and eyebrows also the article suggest that she has Alopecia Totalis and Alopecia Universalis, rarer and more severe forms of the condition that are virtually untreatable.

Help for extreme autoimmune alopecia may be “around the corner”, however, if current tests involving drugs known as JAK inhibitors turn out to be fruitful. There are several tests ongoing and initial results have been very promising, though it is likely to be a few years before the drugs have amassed sufficient data to prove themselves safe and effective.