Saturday, 21 January 2012

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 K√∂sen 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.

7 comments:

  1. Wow, you're totally right! There are more "famous" acromegaly men than women! I never thought about that before.

    I've actually met Tanya! She's the sweetest person out there, and so courageous for taking action and raising awareness of the disease.

    One historic but super sad case of female acromegaly was Mary Ann Bevan (http://en.wikipedia.org/wiki/Mary_Ann_Bevan), who resorted to work in a sideshow as "the ugliest woman in the world" in order to support herself and her family. I feel so sad when I think about Mary Ann's situation. I wish the internet existed back then so that she could find some fellow acromegaly patients she could talk to and feel understood.

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    1. I hadn't heard of Mary Ann Bevan at all, that's a terrible story. Thanks for mentioning her - I think it would be interesting to feature her in a future post.

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    2. I am a 52 yr old woman that's only 5'2 so I went undiagnosed over 22yrs even though I searched all over in different States. Many Acromegalies have "terrible " stories. I know Tanya & belong to the community but more stories need to be told. Help us help you! Thank you for making the blog page. Barbara Maddox. oxxbmj@live.com

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  2. The US has no NHS, but something that works better - private insurance. Nearly everyone has it, as it comes with your salary as a job benefit. Those who are poor get medical care for free. The tiny minority who aren't insured are generally self-employed and have chosen not to purchase insurance.

    Just fyi...

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    1. I couldn't disagree more with your claim that the system works better in the US. Just one example - uninsured children, of which there are estimated to be several million in the US. Even when children are eligible for insurance coverage under plans like Medicaid, all too often children are not enrolled by their families who are unaware that help is available. In the UK, there's no such problem.

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  3. Isn't it gigantism if it starts in early life? I thought acromegaly occurs later in life and too late to affect an increase in height.
    Anyway - female MEP for Coventry, Nikki Sinclaire, either has this, gigantism or is a hermaphrodite. Very manly and is 6ft 4. Perhaps you should visit her blog and inform her she probably has a brain tumour.

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  4. I actually married someone who not only has a mental illness(bipolar)but a even more rare form of this Acromegaly inherited from her mother. When I met Karen she was 5'9" w/a size 11-12 shoe in women's sizes. I was warned prior to meeting her mother that I should expect to not only look up to who would be my future mother-in-law but think of Karen as being as tall or taller if what her family doctor predicted came true. I met Nancy a week into dating Karen and was amazed by the story of how she went from 5'7" w/a size 10 shoe to being just over 6'5 1/2" w/a size 15 in a men's shoe age 25 to 29 before she had Karen. The miracle of Nancy giving birth to not 1 but 3 kids(Karen is in the middle)shocked doctors & they couldn't figure out why Nancy grew & grew with seemingly no usual side effects from Acromegaly. A few months into dating Karen began to complain about extreme pains in her feet,legs,hands and arms. By her 26th birthday & 6 months into dating to marry Karen's shoe size increased to a 13 equev. in men's and she was noticably taller than me at just over 6ft. By our wedding day 6 months later Karen was 6'3" and wearing her mother's men's size 15 shoes! By our first anniv. Karen was towering over me by 7 full inches at 6'5 3/4"! Of course everyone noticed her size more & more as she grew taller and taller. The family & I kept her height,weight/everything secret as we thought she was done growing into our 2nd year of marriage. Then,after our 4th anniv. Karen started having pains again and was hospitalized as she made the poor choice to go off meds for her bipolar in favor of saving on the ridiculous price for ANY medication(s)the doctors told her to take to slow down or stop her growth. Karen spiraled out of control as we found empty boxes of depakote & started causing trouble with our neighbors as her mood swings went from playful/silly one minute to down right nasty & vulger the next. My wife was transforming into a completely different person! Our last night together she was leveling out on new meds for the bipolar and standing 6'7" with a men's 17 shoe! She left me after the mother took over our lives

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