Women With Acromegaly

After yesterday's post, I wanted to write about women with acromegaly,* as pretty much all of the pituitary adenoma sufferers I've identified so far have been men. In terms of acromegaly, I suppose that great height for a man may be seen as an advantage for certain roles as an actor or sportsman, and the physical symptoms of acromegaly - such as enlargement of the hands and feet, jaw, forehead and so on - are perhaps less likely to cause adverse comment in a man than a woman.

But I admit, I considered subtitling this post "Where The Hell Are You?" Women with acromegaly are seriously hard to find; the Wikipedia entry of "notable cases" of acromegaly lists thirteen sufferers, who are all male. It's true that male celebrities with gigantism are, in most cases, famous for roles which they play because of their height; like many actors with disabilities or conditions such as gigantism or dwarfism, casting directors or scouts are looking at their physical attributes first, and their acting talent second. Yet there is a fair list of men with acromegaly who are famous for their roles in TV or film, or for their sporting achievements - and there are even a few male acromegaly sufferers who are famous for something completely unrelated to their height, such as Kevin Aucoin, make-up artist and the historic Pio Pico, last governor of Mexican California.

Yet the only famous women with acromegaly that I've been able to track down so far are famous for their height alone; they are record holders, they might be interviewed for the newspapers, but they don't get the acting roles that great height opens up for their male counterparts. They're not on television playing unusually tall people; it seems as though such parts are for men only. They're not playing sport. There's no female Andre the Giant or Richard Kiel; and yet, when it comes to actors with dwarfism, there are well-known female actors out there, even if they are in smaller numbers than their male counterparts.

Gigantism caused by acromegaly is an extremely rare disease, don't get me wrong - even rarer than acromegaly which develops in adulthood. But it is just as likely to occur in women as in men - so why is it that some male sufferers are able to exploit their illness in a way in which female sufferers are not? The symptoms of acromegaly, especially that which develops in youth - great height, large jaw, big hands and feet - are debilitating, but they also closely correlate with traditional physical markers of masculinity; and they're diametrically opposed to feminine physical ideals. Do women with acromegaly suffer greater discrimination than men? I'd be interested to find out.

Women With Acromegaly

Tanya Angus
Tanya Angus is an activist who raises awareness about acromegaly in the United States. She does a pretty good job of it too; she's been interviewed on the Today Show, featured on ABC News, and even made it across the pond with a story in the Daily Mail. Tanya's acromegaly has proved impossible to control with pituitary surgery or medication, and consequently she's still growing at age 33 and 6'6". After her GP consistently failed to acknowledge that there could be anything wrong, she was diagnosed only by the time that her pituitary tumor had grown to the size of grapefruit. Whilst there was some success in reducing her hormone levels in 2010 using bumper doses of Somatuline, they appear to have been creeping back up again in 2011; and in a country where there's no National Health Service, her medications and hospital treatment are hugely expensive. She speaks about the difficulties that acromegaly brings for female sufferers; she is frequently referred to as "sir" and still receives abuse even in her home town.
See her website at http://www.tanyaangus.com/

Sandy Allen
Sandy Allen was the world's tallest woman before her death at the age of 53 in 2008. Sandy was 7' 7 1/2" - for comparison, currently the world's tallest man is Sultan Kösen at 8'3" - only 8 inches taller. In her later years, Allen was restricted to using a wheelchair to get about; many sufferers of acromegaly gigantism find that as they age, their legs and back are no longer able to support their height and weight. She made appearances on film and television, and aimed to educate children about the importance of accepting differences.

Sandy Allen

Svetlana Singh
Svetlana Singh is an Indian woman with gigantism caused by acromegaly; she was featured on a Channel Four documentary called The World's Tallest Woman And Me, although at 6'8" she is significantly smaller than the record holders. Married to a man who is 6'6", their child Karan was already 3'2" aged just ten months old. Svetlana was hoping to play netball for India at the Commonwealth Games in 2010, before a knee injury which failed to heal forced her to abandon a possible sporting career.

UPDATE: I've also written about famous people with pituitary adenomas here and here, and written specifically about famous people with Cushing's Disease.
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*What is acromegaly? It's a growth condition caused by a pituitary adenoma (tumor) which releases too much growth hormone - this site has a good explanation of the condition.

More Famous People With Lumps In Their Head.

So it turns out that by far my most popular post on this blog so far is the one entitled "Russell Watson, It's Not All About You". I don't know whether my readers just happen to have enduring personal grievances with Russell Watson, or are simply opera purists who object to his pop-operatic croonings. Or maybe it's something else.

So, I'm faced with a choice. In my relentless pursuit of pageviews, should I begin writing reams of personal abuse about Mr Watson, or simply continue to shine a spotlight on the other pituitary ademoaners of the world?

I choose the latter option, and not just because of Britain's vast and unyielding libel laws.*

And so, I present:

A Panoply of Pituitary Problems, or: More Famous People With Lumps In Their Head.

Once again I must apologise for the preponderance of people with acromegaly on this list! Acromegaly is an extremely rare illness, caused by a tumor on the pituitary gland which produces excessive growth hormone. However, acromegaly's symptoms are so visually striking that, especially if the illness occurs in childhood - when it will lead to massive growth in height (gigantism), as well as the growth of soft tissue and bone which occur in adult acromegaly - its sufferers are very visible. So-called "giants" are in demand for certain roles in the film and television industry, as well as certain sports where their height gives them an advantage. Consequently, it's relatively easy to find famous acromegaly sufferers, while celebrities who suffer from other kinds of pituitary adenoma may keep their diagnosis private.

I certainly think that it would be helpful if there were celebrities who were known to have Cushing's, or prolactinoma; it helps sufferers to feel that they're not alone, and emphasizes the fact that, while a pituitary adenoma can be a significant bloody nuisance, it's not the end of the world - and that there are plenty of other people going through the same problems.

Obviously I think it would be awesome if a famous person was known to have a TSH-oma/thyrotropinoma. But if that doesn't happen, well I guess I'll just have to step up to the celebrity line!**

Anyway, back to the point. Presenting:

Carel Struycken
Carel Struycken is an actor and an acromegaly sufferer; he stands seven foot tall. Born in the Netherlands in 1948, he's now 63 years old. You might recognise him from playing Lurch in the Addams Family films (click here for a picture!); he's also appeared in Star Trek: the Next Generation, Men In Black, and even Sargeant Pepper's Lonely Heart's Club Band. According to my trusty Wikipedia, he's interested in photography and the development of virtual reality systems. A pretty cool guy by all standards!

Richard Kiel
Richard Kiel is another well-known actor who suffers from acromegaly; his most famous role was as Jaws in the James Bond films. He's now largely retired, although he voiced a character in the animated film Tangled which came out in 2010, and he's written two books; one a memoir entitled Making It Big In The Movies, the second a historical novel co-authored with Pamela Wallace, about the life of Cassius Marcellus Clay, a 19th-Century abolitionist.

Scott Hamilton
Scott Hamilton, the Olympic gold medallist figure skater, is a craniopharyngioma sufferer. I've not previously mentioned craniopharyngiomas, but like pituitary adenomas they're a rare kind of benign pituitary tumour. They cause similar symptoms to pituitary adenomas; they can interfere with hormone production, although they will cause hormone deficits rather than overproduction of pituitary hormones, and they cause headaches and vision loss. They're most common in children and middle-aged adults; Scott Hamilton was diagnosed with craniopharyngioma aged 51. A remarkable guy, Hamilton won four consecutive World Championships and created Stars On Ice.

Hamilton's last performance on Stars On Ice

UPDATE: For those of you who just can't get enough of hearing about famous people with pituitary tumours, I've also written a post about famous people with Cushing's Disease, a post about famous women with acromegaly, my original post about Russell Watson that sparked this whole thing off, and my first post about famous tumourheads!
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*Russell Watson, I love you.

**Admittedly, I haven't quite worked out how I'll achieve fame. Through my own line of edible greetings cards? By streaking at the London Olympics? For my charitable work with walruses? Ideas on a postcard please.

Russell Watson, It's Not All About You

Following my last post about Russell Watson, I felt inspired to find out about some other famous people who have had pituitary adenomas, using the trusty-yet-woefully-incomplete-and-indeed-quite-inaccurate Wikipedia List of Brain Tumour Patients. And I have learned about:

Pío de Jesús Pico

last Governor of California under Mexican rule.

Governor Pico is my absolute favourite discovery. Not just because I love a guy with a sexy beard, not just because of his awesome name, but also because he is a very intriguing case of retrodiagnosis. Pío Pico lived from 1801 to 1894; acromegaly was first identified in 1886 and he was never diagnosed in his lifetime. In 2010, this paper was published suggesting that he suffered from acromegaly. Looking at pictures of him from 1847 to 1858, he progressively exhibits more of the characteristics associated with acromegaly; this picture from 1858 clearly shows a large forehead, big nose and enlarged lips, a hairless face and hairloss from the eyebrows, which could indicate secondary hypothyroidism, and misaligned eyes which could be due to the tumour pressing on cranial nerves. If you look at the article I linked above, there are more photographs which show his huge hands.

But that's not where the interesting ends. The Governor lived well into his nineties - no mean achievement for a Victorian - while the article suggests that around 80% of patients with untreated acromegaly would be expected to die in the first ten years after diagnosis. It seems instead that his pituitary adenoma spontaneously infarcted sometime after 1858; pictures of him as an old man show that his facial features and hands have become much smaller, he has a full beard and his eyebrows have grown back.*

Kevyn Aucoin

American make-up artist and photographer

Another pituitary adenoma and a really sad case. Kevyn Aucoin was a well-known make-up artist and photographer who had worked for Vogue and Revlon, wrote books and appeared on TV. He was diagnosed with acromegaly aged 39, although it's believed he suffered from the condition for some time before it was diagnosed, and the pain of it resulted in an addiction to prescription painkillers. After surgery for his pituitary tumour, his use of painkillers intensified and he died, only a few months later, from liver and kidney failure. You can read about him on his Wikipedia page and this article.

Sun Mingming

7'9" basketball player

You could probably guess from the subtitle that Sun Mingming also has acromegaly (an overrepresented condition in this sample! I guess because the symptoms are so unusual, lazy journalists don't just write "brain tumour" and move on). Pituitary adenomas which secrete growth hormone and develop before puberty result in sufferers becoming very tall; in adulthood it's all about the growth of soft tissues. Sun underwent gamma knife radiosurgery at the age of 23 and is still playing.

James Murphy

Death metal guitarist man

It's been kind of a challenge to discover much about James Murphy and his pituitary macro-adenoma, but in this article he certainly emphasises the fact that it's a benign tumour rather than cancer, and that although it can cause some serious problems and, rarely, death, the prognosis is nowhere near as bad as a cancerous brain tumour. One online forum I bumped across in my researchings was castigating celebrities who fail to make this distinction, so good on him.

From the hints about his ongoing "hormone inhibiting treatment," which on one site is said to be bromocriptine, and the fact that he's not obviously acromegalicious** I'm guessing he has a nasty prolactinoma, but that is just a guess. I'm kind of hoping so, purely because I've found it so hard to get examples of famous pituitary tumourheads who have something other than acromegaly.*** His tumour seems to have been pretty badly located, as they operated basically through his face rather than the nose or mouth, something I hadn't come across before.

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So there you have it, a brief run down of some famous folk. There are actually quite a few more cases of acromegaly which I came across - people like Andre the Giant, for instance. But that's enough for now.

UPDATE: True to my word, I have written another post about more famous people with pituitary adenomas. I've also written about famous people with Cushing's Disease and the question of whether there are any famous women with acromegaly.
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*Sadly, the article notes that he suffered a lot of abuse and discrimination in his lifetime for his unusual appearance.

**Acromegaly sufferers: you should use this word.

***Acromegalicious folk are obviously awesome, but I'm trying to be balanced here. As for finding anyone famous with a TSHoma like me - it's difficult enough just finding published case studies.