Nurse Likens Losing Her Hair to Ophiasic Alopecia to Losing Her Identity

A nurse whose hair loss has been caused by a rare form of the autoimmune disorder Alopecia Areata has described herself as looking like “a Barbie doll that’s been attacked by a kid.”

Carley Manhire, 28, from Melbourne, has been losing hair for almost than a decade, having been diagnosed with a condition named Ophiasic Alopecia Areata when she was still in her teens. Whereas Alopecia Areata typically leads to the sudden appearance of small bald patches (from around the size of a £2 coin), Ophiasic Alopecia Areata leads to thinning around the entire hairline almost as if the hairline had been raised several inches around the head.

This “band” of baldness is what lends the name “Ophiasic” to the condition: ophis is Greek for snake and the shape Ophiasic Alopecia Areata takes is considered somewhat serpentine.

Accepting possibility of permanent hair loss

Carley Manhire Before and After Shaving Her Head

Talking to the Daily Mail in Australia, the nurse said that her family didn’t think much about it when her mother first noticed a bald patch at the back of her head when she was 19, but a visit to a dermatologist just to be on the safe side led to the shock diagnosis.

The condition steadily got worse, despite a treatment regime that Ms Manhire says has included oral steroid therapy, steroid injections, immunosuppressant therapies and topical steroid lotions.

This combination of treatments led to Ms Manhire gaining weight (as much as 9kg) and feeling both anxious and nauseous. And it didn’t reverse the hair loss.

In light of her most recent bout of pronounced shedding, which began in March 2016 and has progressed rapidly, Ms Manhire says she feels she will soon lose her hair permanently. “Right now I’m contemplating just shaving my head,” she tells the Mail. “I’m tired of seeing clumps on my pillow.”

Just after the article was published in February 2017, Carley did shave her head.  She said of the experience of both making the decision and then living with her newfound baldness: "I made the extremely difficult decision to shave the remainder of my hair as waking up to a pillow full of hair and brushing chunks of hair put everyday was becoming too distressing... I'm trying to not let my struggle define me. Yes, people stared. Yes, people glanced my way. But I walked down the street with my head held high without my imperfections covered for the first time... To make a change; you need to be the change."

There is little doubt that that extreme forms of Alopecia Areata are difficult to treat. Alopecia Totalis and Alopecia Universalis are two severe variants that lead to total hair loss on the head, with the latter condition leading to total hair loss on the body, too. Topical immunotherapy conducted in hospitals is sometimes recommended by dermatologists, though it only has a success rate of around 40 per cent and its application can be somewhat difficult.

Ray of hope

Many people with Alopecia Totalis and Universalis are currently waiting with baited breath for news of a suite of drugs named JAK inhibitors which have been used and continue to be used in a number of medical trials around the world.

These drugs, which were originally developed to treat rheumatoid arthritis, certain cancers and other conditions, have shown themselves to be very effective at regrowing hair on people with Alopecia Totalis/Universalis, though approval for these drugs for widespread use on Alopecia-related conditions is unlikely to happen for some years yet if it happens at all. As with all medications, these drugs need to be thoroughly investigated and have to pass many various tests in order to ensure their safety and tolerability, as well as their efficacy for their stated purpose, before they can be made available for prescription use.

From the information that has already been released about how these early-stage clinical trials are going, it certainly seems possible that JAK inhibitors may be effective on people with Ophiasic Alopecia Areata in the future, although Belgravia is not aware of any specific trials into this condition having been announced.

Alopecia Areata can be treated

What must be very frustrating to people with a severe form of Alopecia Areata is that the condition in its non-extreme form - where it causes patchy hair loss to the scalp only - can clear up of it's own accord in many cases. It can also respond well to existing pharmaceutical alopecia areata treatments in many cases.

At Belgravia, hair loss specialists understand the difficulties in dealing with this type of shedding and often use a bespoke selection of treatments, including recommended formulations of high strength minoxidil to help promote new hair growth. This approach has resulted in many happy clients, some of whom can be seen before and after starting their courses in our Alopecia Areata treatment Success Stories gallery.

Unfortunately for Ms Manhire, treatments for her rare form of Alopecia Areata are clearly not working and she is now looking for different solutions. To that end, she has shaved her head and launched a GoFundMe page on which is she is aiming to raise AU$7,000 to buy a medical-grade wig. She is also asking for donations for Australia’s National Alopecia Areata Foundation to help fund research. “I know it’s just hair and I have my health, but it’s like losing my identity,” she says. “The prospect of being bald at such a young age is just terrifying.”