Swimming Creates ‘Safe Space’ for Alopecia Totalis Teen Athlete

A young American Olympic hopeful has revealed how her love of swimming has helped her to deal with hair loss that has been caused by the autoimmune disorder Alopecia Totalis.

Madelyn Donohoe, 15, who is one of the leading lights in the Knights swim team at Bishop O’Connell College in Arlington, Virginia, first started losing hair when she was 11. Her condition Alopecia Totalis is a rare form of Alopecia Areata. However, whilst a diagnosis of Alopecia Areata typically follows evidence of sudden patchy hair loss anywhere on the scalp; a diagnosis of Alopecia Totalis follows total baldness of the entire head, including losing eyebrows and eyelashes.

Madelyn, who has been a keen swimmer since she was six, tells the Washington Post that she has been taking the sport seriously since she was 10, when she started competing in bigger events in places as far afield as New York and Florida.

Caps hide hair loss

As well as being a natural at swimming, regularly winning the competitions she is entered into, what the teen especially loves is the fact that swimming caps are the ultimate leveller. When she wears one in the water, no one could guess that she doesn’t have any hair.

Like others with Alopecia Areata or Totalis, Madelyn’s hair does sometimes grow back. As with all autoimmune hair loss conditions, this ebbing-and-flowing of the disease can be especially frustrating. A typical scenario involves responding with horror at the sight of first losing hair, shock at a diagnosis, relief when hair starts to grow back and then despondency when it starts to fall out again.

If hair does grow back, as it does in many cases of Alopecia Areata though this is less common in cases of Alopecia Totalis or Alopecia Universalis, it is also possible that it will never fall out again. The difficult part is that you just don’t know.

Senior Belgravia hair loss specialist, trichologist Leonora Doclis explains: "In cases of alopecia totalis and or universalis hair can spontaneously grow back and it can stay for good. There are cases where it took more than a decade but the hair did eventually grow back without intervention. The likelihood of this permanent regrowth occurring is very low however, although there are currently no available statistics to put a precise figure on the chances."

For Madelyn, the Post article says that when distress over her condition becomes too much, she knows where to turn. “Swimming has always been my safe space,” she says.

In an interview with ABC News the rising star displays a sunny smile and a positive outlook. "There's a lot worse things in the world," the inspirations teen explains. "You can't worry about yourself, you can't feel bad, you just have to keep going - keep going for your dreams."

Tougher for under 16s

Children often have an especially tough time when it comes to forms of Alopecia Areata, due to bullying and having fewer treatment options than those aged 16 and over. For those affected by the patchy form of Alopecia Areata, which is confined to the scalp only, alopecia areata treatment at Belgravia is possible from 16 years of age upwards. This is because 16 is the lower age requirement for the formulations of high strength minoxidil our specialists recommend applying to the scalp as part of the course.

In the case of Alopecia Totalis, however, this condition currently cannot be treated effectively in either children or adults.

For this reason, and following some recent breakthroughs in the US in particular, a new type of drug is currently being trialled as a possible treatment option, particularly for the more severe types of alopecia. The focus is on a suite of drugs named JAK inhibitors, and initial trials suggest that if the doctors behind these studies can prove long-term safety, efficacy and tolerability - including finding ways to minimise potentially harmful side-effects, new treatments may be forthcoming in the next few years.