A story broke some time ago about a young lady with acromegaly who sued the NHS, and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!
The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.
Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*
Nice.
Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:
- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.
And, most significantly:
- She wishes to receive all future treatment in the private sector.
Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").
Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.
BUT.
The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.
I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is, according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.
So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that."
But I doubt it. And I'm not just saying that because they're bigger than me.***
Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".
Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me for fifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.
And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.
But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?). I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.
I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.
But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you.
I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?
______________________________________
*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!
** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.
***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.
Showing posts with label appearance. Show all posts
Showing posts with label appearance. Show all posts
Wednesday, 15 August 2012
Monday, 23 July 2012
IMFW: Lipodystrophy
Today's Interesting Medical Fact of the Week is about lipodystrophy, defined by the ever-noble Wikipedia as "a medical condition characterized by abnormal or degenerative conditions of the body's adipose tissue." Adipose tissue = fat. As you would know if you watched the freaky Dr Who episode which featured little fat aliens called the Adipose.
But I digress.
I first heard about lipodystrophy when chatting to a very lovely nurse in the research department of the hospital where I went to have a bunch of tests at the beginning of the month. It's a subject they have been doing some research into, and I have to admit it kind of caught the imagination.
The term "lipodystrophy" actually covers a whole range of conditions in which the body's fat does weird things. It may include a loss of fat from certain areas of the body (lipoatrophy), or even an increase in fat in certain areas (lipohyperthrophy), or even both (lipoWTF-ery):
Congenital generalised lipodystrophy:
A rare genetic disorder in which there is extremely low fat in the subcutaneous tissue.
Other symptoms include having a giant liver and being very hairy. And, unfortunately, heart problems.
Benign Symmetric Lipomatosis:
In which the patient develops extensive fat deposits in the neck, head and shoulder area. Often associated with alcohol abuse.
Barraquer-Simons Syndrome:
This rare condition usually appears after a viral infection in childhood, and is characterised by the gradual loss of fat from the top half of the body; the face, neck, shoulders, arms and chest, often accompanied by an increase of fat in the thighs, and sometimes by other symptoms such as deafness and epilepsy.
HIV-associated lipodystrophy:
This condition occurs in people with HIV, usually those who are being treated with anti-retroviral drugs, although there is some debate about whether it is caused by the drugs or by HIV infection alone. Often there may be fat accumulation in the back, creating a 'buffalo hump', the neck and breasts, and patients often develop abdominal obesity. However, at the same time they may have loss of fat in the face, arms, shoulders, thighs and buttocks.
Those are just a few examples - lipodystrophy is quite poorly understood and quite difficult to treat. Liposuction may be used to treat excess fat deposits, or lipomas (benign tumours of fat tissue) may be removed surgically; equally implants or even fat injections may be used to improve the cosmetic appearance of fat loss from the face and body.
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| Dr Who: making obesity cute. |
I first heard about lipodystrophy when chatting to a very lovely nurse in the research department of the hospital where I went to have a bunch of tests at the beginning of the month. It's a subject they have been doing some research into, and I have to admit it kind of caught the imagination.
The term "lipodystrophy" actually covers a whole range of conditions in which the body's fat does weird things. It may include a loss of fat from certain areas of the body (lipoatrophy), or even an increase in fat in certain areas (lipohyperthrophy), or even both (lipoWTF-ery):
Congenital generalised lipodystrophy:
A rare genetic disorder in which there is extremely low fat in the subcutaneous tissue.
Other symptoms include having a giant liver and being very hairy. And, unfortunately, heart problems.
Benign Symmetric Lipomatosis:
In which the patient develops extensive fat deposits in the neck, head and shoulder area. Often associated with alcohol abuse.
Barraquer-Simons Syndrome:
This rare condition usually appears after a viral infection in childhood, and is characterised by the gradual loss of fat from the top half of the body; the face, neck, shoulders, arms and chest, often accompanied by an increase of fat in the thighs, and sometimes by other symptoms such as deafness and epilepsy.
HIV-associated lipodystrophy:
This condition occurs in people with HIV, usually those who are being treated with anti-retroviral drugs, although there is some debate about whether it is caused by the drugs or by HIV infection alone. Often there may be fat accumulation in the back, creating a 'buffalo hump', the neck and breasts, and patients often develop abdominal obesity. However, at the same time they may have loss of fat in the face, arms, shoulders, thighs and buttocks.
Those are just a few examples - lipodystrophy is quite poorly understood and quite difficult to treat. Liposuction may be used to treat excess fat deposits, or lipomas (benign tumours of fat tissue) may be removed surgically; equally implants or even fat injections may be used to improve the cosmetic appearance of fat loss from the face and body.
Saturday, 16 June 2012
A Lesson From My Former Landlady: Part 1
I was originally going to name this post something else, but in deference to my readers who have delicate constitutions, I decided against it. Anyway. While it will be something of a massive rant, it's actually a good way of illuminating a topic that I've been wanting to write about for a while.
crazy bitch June - gave me notice in January that she'd need me to move out in June because she wanted to redecorate the room I was in. This seemed a suspect excuse, as my room was the only part of the house not in need of decorating, but no matter; I didn't have the chance to discuss the issue with her because she took the rather peculiar decision not to tell me in person, but to wait until I went on a weekend away and then slip a note about this under my door. I started to look for a new place almost immediately, because I knew I would have exams in June and didn't need the stress of moving out at the same time.
In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*
I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.
The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.
June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.
She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.
By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.
Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.
When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...
It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.
That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?
Because it shouldn't.
You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.
Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?
Of course it would.
And that's why I'm glad we didn't go piss on her doorstep.
Well... mostly glad.
____________________________________________________
* So much for "redecorating".
**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.
***
So for about eight or nine months from last summer, I lived as a tenant in a house occupied by my former landlady and her two children, who split their time between her house and their dad's. My former landlady - let's call her In March, I found a lovely new house nearby and gave her my notice. She said that this was fine as it didn't matter to her when the room was redecorated. I tried to organise a time to go through the inventory and get my deposit back, but she was strangely cagey about it. I offered to go through it with her on the day I was moving out, having just cleaned the room with my mum, but she refused. After moving out, again I kept trying to arrange a time to go through it all with her but she continued putting me off until I suddenly received a text message ultimatum that it had to be on that Friday (a day which I had already informed her I wouldn't be able to do) because she had someone moving in the next day.*
I spoke with my manager and was able to leave work early that day in order to go and see her, despite the fact that things were super busy that week and I knew that I would have to work over the weekend to make up the time I lost by leaving early. So off I trotted to my old house.
The instant I got there, things seemed strange. I was let in, but although I had explained to June that it was an awkward time and I would be in a rush, she seemed surprised that I was in a hurry and she stomped upstairs, obviously in a bad mood.
June was always a shouty woman. When her kids were staying, there was shouting every evening - about eating dinner, about singing lessons, about baths, you name it. What I was not prepared for, however, was for her to turn her shoutyness on me practically as soon as we stepped into my former bedroom. She pointed to a laughably small build-up of scale on the bathroom tap and had a go about it - then when I pointed out that it had always been there, she claimed that if there had been scale on the tap, she would have written it down in the inventory. I pointed out that this was not the case, as there were various holes in the walls and floor, the broken curtain fitting etc. which were not in the inventory - seeing as the inventory is a list of the room's furniture, not a detailed description of every aspect of its decor. She yelled that the holes in the floor were "not the problem" and continued shouting, accusing me of allowing a terrible limescale build-up in the shower, "ruining" a bookshelf, leaving the room dusty, etc. etc.
She accused me of not cleaning the room at all before I left; I pointed out that a) not only has she actually seen me going upstairs and downstairs with mops and buckets and cleaning products on the day I moved out but I had also spoken to her about which mop she would rather I use to clean the floor, and b) because she refused to do the inventory on the day, obviously the room now had two week's worth of dust in it. Which only made her shout more. At one point, she yelled "Frankly, Emer, I don't believe you did any cleaning the whole time you were here!" Which is a bit of a bloody cheek coming from a woman whose kitchen was so permanently disgusting that a) it attracted mice** and b) my appalled yet kindly mother did some of June's washing up on the day I moved out just to make it less horrific.
By this time, all the shouting was really starting to stress me out; I was on the verge of tears. I'd been on the lanreotide injections for a few months, and the thing about them that I think I've mentioned before is that they really do make me a lot more emotional and easily upset, for some reason. I had never told June about the whole brain tumour thing or the injections or anything, because frankly I didn't think it was any of her business and it tends to make things awkward.
Anyway, I asked her (politely!) to stop shouting. She shouted "I'M NOT SHOUTING!" at me, then continued shouting. I was so stressed out by the whole thing that I was physically shaking and feeling sick, so when she told me she was going to dock me 10% of my deposit (apparently cleaning a tap costs £65 these days. I'm not sure she's doing it right) I barely even argued because I was so desperate to get out of there. I was still trying to stay calm but I was kind of furious at myself for being so easily upset, so when she continued ranting as she wrote out the cheque I said: "June, I really don't appreciate your attitude today; I made a real effort to fit in with your plans even though it was extremely inconvenient for me, I took time off work and you've been nothing but rude to me the entire time I've been here." Predictably, she started shouting again, threatened to rip up the cheque, blah blah blah.
When I left my former home (with the cheque, thank Christ), I got about four steps down the road before bursting into tears and I was still shaking by the time I got home, at which point I realised that I was probably a bit hypoglycaemic (occassional side effect of the lanreotide injections), ate a couple of biscuits and felt slightly less awful, despite the fact that I had just effectively paid £65 to run away. Fortunately my lovely boyfriend was visiting that evening and he made me feel a lot better, although the whole story made him kind of furious. I believe pissing through June's letterbox was mentioned, and to this day I slightly regret my decision to take the high ground there...
It seems pretty plain to me that June's plan right from the start - before I'd even vacated my room or she had seen it - was to get that money off me. The way she dodged my emails trying to organise it, and then suddenly demanded to have it on a day she already knew I couldn't do, indicates to me that she was hoping I would say I couldn't come, so that she could just arbitraily dock the money and send the cheque in the post without having to do it to my face. The way she avoided doing the inventory on the day I moved out when my mother was there as a witness, and her incredibly aggressive behaviour as soon as I stepped through the door all make it seem as though she was determined to get that £65 by hook or by crook.
That kind of behaviour isn't acceptable from anyone to anyone. Society might consider it rather worse for my landlady to try to intimidate me, a 23 year old girl than, say, a 46 year old bloke. Is that fair? No. Would she even try it on with a 46 year old bloke? Who knows? I certainly doubt she would have behaved in the same way if my boyfriend had been with me. And what about the fact that I'm sick? If June had known about my pituitary tumour, about the fact that I was on hormone treatment which made me feel emotionally pretty delicate and physically resulted in odd bouts of hypoglycaemia, would she have still done it? If I went up to her now, knocked on her door and said "Oh, by the way, June, just so you know - I have a benign brain tumour," would that change the way she felt about her behaviour towards me?
Because it shouldn't.
You can't always tell if someone is sick. Not every ill person has a wheelchair or a bandage or an obvious badge of their personal infirmity. Heck, even if you now them pretty well - even if you live with them - you might not know about it. Yet the default in society is to treat everyone as if they were well and make 'special allowances' for sick people - once they produce a medical certificate. There are plenty of people in the world who would probably be horrified to realise that the shop assistant they were a bit of a dick to yesterday has a brain tumour, or the slightly unhelpful telephone operator they're shouting at has just come back to work after going through chemo. We do these kind of things all the time - and I'm by no means claiming that I'm innocent of this, by the way - and yet, if we knew of the person's illness, or bereavement, or disability, we would never dream of treating them in that way. And the only way to get around this is by trying to treat everyone with as much respect as you can muster, all the time. And even when someone is behaving appallingly, you need to give them the benefit of the doubt, because you just don't know. And that is a really difficult thing to do.
Because here's the killer question: If I found out that June had just been told she had Huntington's, or MS, or cancer, would that change how I felt about her behaviour - even though it wouldn't excuse it?
Of course it would.
And that's why I'm glad we didn't go piss on her doorstep.
Well... mostly glad.
____________________________________________________
* So much for "redecorating".
**Which June then killed, which seemed rather unfair. If she didn't leave food for them around all over the place, those poor mice would probably still be alive, frolicking happily in the compost heap.
Thursday, 24 May 2012
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.
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.
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.
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| Mary Ann Bevan |
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.
Monday, 23 April 2012
IMFW: Life Imitates Art
So Blogger has changed its layout and everything, which is deeply confusing to a simple soul like me. If I manage to do anything wildly stupid like posting this next April or forgetting to use a title or something, please forgive me. I am easily baffled.
Anyway: back to IMFW! Today's Interesting Medical Fact of the Week is kind of related to two of my previous interesting medical posts, which focused on face transplants. There's an interesting article on the BBC News website about the fact that the University of Lincoln is offering an art course to plastic surgeons and medical students. They work at life drawing, self portraiture and clay modelling, with a focus on the real-life application for these skills: applying them in their surgical work.
It sounds a little bizarre at first, but at second glance it does make sense. The course aims to enhance students' observational skills and their perceptions of their work, emphasizing that they should look at reconstruction from a patient's point of view as well as their own.
Despite its rather trite acronym, the name of the British Association of Aesthetic Plastic Surgeons (BAAPS...) emphasizes the importance of beauty and aesthetic in the work of plastic surgeons, something which is obviously important in purely cosmetic procedures, but equally key in reconstructive work. I know next to nothing about the training of plastic surgeons, but it would certainly be interesting to know whether surgeons who go into this specialty tend to have more of an interest in art compared to those who gravitate towards other specialisms.
A press release from the university emphasizes the historical link between art and medicine, which was far more pronounced centuries ago; it was considered that artists needed an understanding of anatomy in order to recreate the human form on canvas, while medical texts relied upon anatomical drawings produced by artists, who would often attend dissections. Vesalius's seminal work on anatomy, De humani corporis fabrica, written in 1543, incorporated anatomical illustrations from artists working in the studio of Titian. Perhaps now the link between art and medicine link is being strengthened once more.
Anyway: back to IMFW! Today's Interesting Medical Fact of the Week is kind of related to two of my previous interesting medical posts, which focused on face transplants. There's an interesting article on the BBC News website about the fact that the University of Lincoln is offering an art course to plastic surgeons and medical students. They work at life drawing, self portraiture and clay modelling, with a focus on the real-life application for these skills: applying them in their surgical work.
It sounds a little bizarre at first, but at second glance it does make sense. The course aims to enhance students' observational skills and their perceptions of their work, emphasizing that they should look at reconstruction from a patient's point of view as well as their own.
Despite its rather trite acronym, the name of the British Association of Aesthetic Plastic Surgeons (BAAPS...) emphasizes the importance of beauty and aesthetic in the work of plastic surgeons, something which is obviously important in purely cosmetic procedures, but equally key in reconstructive work. I know next to nothing about the training of plastic surgeons, but it would certainly be interesting to know whether surgeons who go into this specialty tend to have more of an interest in art compared to those who gravitate towards other specialisms.
A press release from the university emphasizes the historical link between art and medicine, which was far more pronounced centuries ago; it was considered that artists needed an understanding of anatomy in order to recreate the human form on canvas, while medical texts relied upon anatomical drawings produced by artists, who would often attend dissections. Vesalius's seminal work on anatomy, De humani corporis fabrica, written in 1543, incorporated anatomical illustrations from artists working in the studio of Titian. Perhaps now the link between art and medicine link is being strengthened once more.
Monday, 16 April 2012
IMFW: Facing Up To Your Problems
IMFW retro-post is sneaky. Yes, that's right. I am writing this Interesting Medical Fact of the Week on Wednesday because I'm rubbish,* but I am retroposting it so it looks like it was posted on Monday, because I'm cunning. But I'm telling you about it because I'm honest. Damnit!
Anyway, last week's interesting medical look at face transplants proved pretty popular - let's be honest, face transplants are both amazing and intriguing. And everyone wants to see the pictures. So I figured that I would carry on in the same vein/paranasal sinus, because I am too unimaginative to come up with another good topic at this late hour.
But here is a link to a pretty amazing film clip of Dallas Wiens, the first American man to undergo a full face transplant, one year after surgery. He suffered serious burns from a high-voltage wire when he was just 23 years old, to the point where his entire face was effectively destroyed; he was blind, with no lips or nose, and he had to be placed in a medically induced come for three months while surgeons attempted to reconstruct what they could. Since the transplant, he has regained some facial sensation, is able to smell, speak and breathe through his new nose. When you see how severely disfigured he was before the transplant, you can appreciate just how incredible the effects of the surgery were.
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*And because I was in the office for ten hours straight on Monday and so busy I only just managed to take a ten minute lunch break.
Anyway, last week's interesting medical look at face transplants proved pretty popular - let's be honest, face transplants are both amazing and intriguing. And everyone wants to see the pictures. So I figured that I would carry on in the same vein/paranasal sinus, because I am too unimaginative to come up with another good topic at this late hour.
But here is a link to a pretty amazing film clip of Dallas Wiens, the first American man to undergo a full face transplant, one year after surgery. He suffered serious burns from a high-voltage wire when he was just 23 years old, to the point where his entire face was effectively destroyed; he was blind, with no lips or nose, and he had to be placed in a medically induced come for three months while surgeons attempted to reconstruct what they could. Since the transplant, he has regained some facial sensation, is able to smell, speak and breathe through his new nose. When you see how severely disfigured he was before the transplant, you can appreciate just how incredible the effects of the surgery were.
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*And because I was in the office for ten hours straight on Monday and so busy I only just managed to take a ten minute lunch break.
Monday, 2 April 2012
IMFW: Face Transplants
Today's Interesting Medical Fact of the Week is all about face transplants! Recently an American man named Richard Lee Norris received what is allegedly the most extensive face transplant ever carried out, in which he received a new jaw, teeth, tongue and nose. The pictures are pretty incredible. After being severely disfigured by a gun accident, Mr Norris had been living as a recluse for fifteen years, wearing a mask whenever he had to leave home - and he had lost his sense of smell completely. That's all changed.
Only the 23rd facial transplant ever carried out, the operation was a gruelling 36 hours long; all Mr Norris' facial tissue from the scalp to the back of the neck was completely replaced. As with every transplant, there is a risk of rejection; recipients of face transplants have to take immunosuppressant drugs for the rest of their life, which increase their risk of cancer and infection. The first Chinese recipient of a partial facial transplant, Li Guoxing, died in 2008 just two years after his transplant, when he either stopped taking his immunosuppressant drugs or failed to take them correctly. There is also the potential psychological issue of patients finding it difficult to adjust to their new face; although such transplants don't give the recipient the face of the donor, nevertheless even after the most successful operation they will never regain their appearance from before their injury.
The world's first face transplant came in 2005 in France, on Isabelle Dinoire, whose face was so badly mauled in a dog attack that she was left unable to speak or eat. Dinoire has had problems with her transplant, including kidney failure and two episodes in which her body tried to reject the transplant. But from the interviews she's given, it seems that she has been happy with the results. The first full facial transplant came in March 2010, when a Spanish man who had accidentally shot himself in the face received a completely new jaw, nose, teeth, cheekbones and skin.
Face transplants can be controversial because some people see them as being done for "cosmetic", rather than purely medical reasons. Yet if you look at the people who have received facial transplants, it's clear that in every case their disfigurement affects their lives in much more than a purely "cosmetic" way. These are people so badly injured that they can no longer eat, drink, or - in some cases - breathe independently. For them, the risk of rejection and of a shortened lifespan due to the immunosuppressant drugs is worth taking in order to have the chance to live a more normal life.
Equally, as the story of Richard Lee Norris shows, even for those who remain independent after injury, the effects of severe facial disfigurement are much more wide-reaching than the purely medical, affecting employment, relationships and simply the ability to leave the house without feeling the need to cover your face. It's difficult for those of us who haven't experienced disfigurement to understand just how significant an impact it can have on people's lives. Obviously, face transplantation is an extreme step and certainly not one which is suitable for most people with serious disfigurement - but it should be available as a last option for those who cannot be treated by other means.
Some doctors have raised concerns over the way these transplants are followed up, suggesting that there should be greater emphasis on psychological analysis of patients, to gain deeper understanding of just how facial transplants affect recipients.
The Guardian has a short history of face transplants here.
Only the 23rd facial transplant ever carried out, the operation was a gruelling 36 hours long; all Mr Norris' facial tissue from the scalp to the back of the neck was completely replaced. As with every transplant, there is a risk of rejection; recipients of face transplants have to take immunosuppressant drugs for the rest of their life, which increase their risk of cancer and infection. The first Chinese recipient of a partial facial transplant, Li Guoxing, died in 2008 just two years after his transplant, when he either stopped taking his immunosuppressant drugs or failed to take them correctly. There is also the potential psychological issue of patients finding it difficult to adjust to their new face; although such transplants don't give the recipient the face of the donor, nevertheless even after the most successful operation they will never regain their appearance from before their injury.
The world's first face transplant came in 2005 in France, on Isabelle Dinoire, whose face was so badly mauled in a dog attack that she was left unable to speak or eat. Dinoire has had problems with her transplant, including kidney failure and two episodes in which her body tried to reject the transplant. But from the interviews she's given, it seems that she has been happy with the results. The first full facial transplant came in March 2010, when a Spanish man who had accidentally shot himself in the face received a completely new jaw, nose, teeth, cheekbones and skin.
Face transplants can be controversial because some people see them as being done for "cosmetic", rather than purely medical reasons. Yet if you look at the people who have received facial transplants, it's clear that in every case their disfigurement affects their lives in much more than a purely "cosmetic" way. These are people so badly injured that they can no longer eat, drink, or - in some cases - breathe independently. For them, the risk of rejection and of a shortened lifespan due to the immunosuppressant drugs is worth taking in order to have the chance to live a more normal life.
Equally, as the story of Richard Lee Norris shows, even for those who remain independent after injury, the effects of severe facial disfigurement are much more wide-reaching than the purely medical, affecting employment, relationships and simply the ability to leave the house without feeling the need to cover your face. It's difficult for those of us who haven't experienced disfigurement to understand just how significant an impact it can have on people's lives. Obviously, face transplantation is an extreme step and certainly not one which is suitable for most people with serious disfigurement - but it should be available as a last option for those who cannot be treated by other means.
Some doctors have raised concerns over the way these transplants are followed up, suggesting that there should be greater emphasis on psychological analysis of patients, to gain deeper understanding of just how facial transplants affect recipients.
 |
| Connie Culp, the first US recipient of a face transplant. |
Wednesday, 15 February 2012
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.
_film_poster.jpg)
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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.
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.
*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.
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