The Ugliest Woman In The World

Today's post was inspired by a suggestion from one of my lovely commenters - I have forgotten who (sorry!), but thank you anyway for the idea.

Mary Ann Bevan was known as the Ugliest Woman in the World. She suffered from acromegaly, a condition in which her pituitary produced too much growth hormone, which led to deformity of her face and abnormal growth, as well as headaches and joint problems. After the death of her husband, she was forced to support herself and her four children by working in the freak show at Coney Island in the 1920s.

Mary Ann Bevan

In 2006, Hallmark produced and sold a greetings card in the UK which featured a picture of Bevan and the legend: "When the screen went back, he was to always regret the words . . . ‘I’ll go for number three, Cilla.’”

Dr Wouter de Herder, a Dutch endocrinologist who was on holiday in England, recognised the photograph and complained to Hallmark. According to theis article, he said: "“I immediately recognised the photo as I had just written an article about Mary Ann Bevan... She was in several [freak] shows in England and then later in the United States, but she led a miserable, painful life. I simply don’t think its right in 2006 to use her image to create a sick birthday card. I feel that this card is insulting to all patients who suffer from the same condition.”

Ironically, his words in fact echoed those of the famous neurosurgeon Harvey Cushing eighty years earlier, who attempted to treat Mary Ann Bevan towards the end of her life. He wrote to Time magazine in 1927, complaining of the way it had made fun of Bevan: “This unfortunate woman who sits in the sideshow of Ringling Brothers [...] has a story which is far from mirth-provoking,” wrote Dr Cushing.“She, previously a vigorous and good looking young woman, has become the victim of a disease known as acromegaly . . . Being a physician, I do not like to feel that Time can be frivolous over the tragedies of disease.” Bevan died just six years later.

I've written before about the difficulties facing women with acromegaly, but I think this story really hammers the message home. In eighty years, it seems that although our ability to treat this debilitating disease has improved greatly, our attitudes to its sufferers have hardly changed.

Hallmark pulled the card from stores, but not before its communications manager issued this memorable statement: “Once we found that this lady was ill, rather than simply being ugly, then the card was [...]withdrawn immediately, as it would breach anything we would do in terms of taking the mick out of anyone who was poorly.”

Ugly yet healthy people - be warned.

Acromegaly: A Monstrous Illness?

Last week I wrote about the first of two websites which got me thinking about acromegaly, and I've been thinking away all weekend. The second thought-provoker was this post, on a blog about horror films, which mentions the little-known 1944 film The Monster Maker. Why is this film of interest? Because the plot centres around acromegaly. Kind of. Let's just say that The Monster Maker is to acromegaly as The Core is to science.

Brief disclaimer: I haven't watched this film, just read about it. But here's a rough synopsis; I can't imagine anyone's too worried about spoilers for a film that came out almost seventy years ago.

We start with one mad scientist, Dr. Igor Markoff.* Years previously, he injected his wife with the "acromegaly virus" for the rather melodramatic reason that he wants to disfigure her so that no other men would want her. Consequently, she committed suicide. In the present, he comes across Patricia, the daughter of a famous pianist, who just happens to look exactly like his dead wife. Before she developed acromegaly, presumably.

But Patricia isn't interested in Markoff's subtle advances.** So obviously, the logical course of action is for Markoff to infect her father with the "acromegaly virus" as well, and then use the prospect of a possible cure to blackmail him into getting her to marry Markoff. The ending of the film seems somewhat confused, but by all accounts it appears to involve a man in a gorilla suit. Because... well, why the hell not?

Leaving aside the dodgy science, and indeed the gorilla, this film sounds interesting. Patricia's father, Anthony Lawrence, becomes sick and deformed, taking on the appearance of a monster thanks to some serious effort on behalf of the makeup department; Igor Markoff looks entirely normal, except for his trademark I'm-an-evil-genius goatee. Lawrence's appearance inspires fear in the viewer; Markoff is the real monster. The moral of the story is so crushingly obvious that a child could pick up on it, although these days most children would probably be complaining that the film isn't scary enough - and besides, it's in black and white! What's that about? And why didn't they just CGI the gorilla? Seriously, WTF.

But people who suffer from disfiguring diseases like acromegaly and Cushing's Disease in real life don't have the advantage of B-movie actors and low budget sets to ram this point home to every stranger they run across in their daily life.

Acromegaly sufferers often experience discrimination because of their appearance. In advanced cases, as well as facial deformity and increased height, massive growth of soft tissues may give the impression of being overweight. The resultant discrimination can be particularly bad for women; activist Tanya Angus has spoken about how she's treated differently since developing the condition.

 Similarly, in Cushing's Disease, a pituitary tumour causes sufferers to put on weight, often to the point of obesity. Not for nothing has it been called "the Ugly Disease". But strangers don't know that; most people are likely to think that a person is overweight due to greed. To quote a Ricky Gervais joke "We all eat too much in the West. But it's people who say it's glandular, isn't it? It's not glandular, it's greed". Well, sometimes... it is glandular. It's pituitary glandular, it's adrenal glandular, it's thyroid glandular. Glands can seriously screw you over, as I have learned. It's difficult enough being diagnosed with a serious, hard-to-treat illness which causes physical pain and makes you fat and destroys your self-esteem. But to also have to put up with abuse from complete strangers who refuse to believe you're even ill must be horrific. And because Cushing's usually takes a long time to diagnose, sufferers often go years believing that it's their fault that they're putting on so much weight, even though they're eating healthily and exercising well.

These are problems that need to be addressed. It's bizarre that while it's now (happily) seen as unacceptable to discriminate against people on the grounds of race, gender or sexuality, discriminating against people who are overweight, and making assumptions about their medical conditions, seems to be ok.

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*N.B. that it's very important for mad scientists to have vaguely foreign-sounding names.

**He sends her flowers every single day, filled with creepy notes and messages. Oh, and he watches her continually. No matter what Twilight's told you, boys, stalking is not a romantic way to woo a lady.