Sad News about Tanya Angus, Acromegaly Sufferer

I've been out of the world for a little while thanks to my surgery, so I was saddened to find out only today that Tanya Angus, an acromegaly sufferer, passed away on the 14th January. She was aged just 34, and died from heart failure and transient ischaemic attack (a "mini-stroke").

Tanya Angus had one of the most severe cases of acromegaly (a.k.a. gigantism) ever seen; it was not until her pituitary adenoma (tumour) grew to the size of a grapefruit that she was finally diagnosed. By this time, the tumour wrapped around her pituitary gland proved extremely resistant to surgical and radiotherapy treatment. Her condition caused her to grow from 5'8" at the age of 21 to 7ft tall by the time of her death, and to go from 130 to 400lbs. Just last August it seemed that injections to inhibit her growth hormone production had been successful, but by October sadly her levels of growth hormone were rising once again.

She was a well-known figure in the acromegaly community for her efforts to raise awareness of the condition, and to encourage education about and early detection of gigantism among the medical profession. Anyone reading her website, or the comments sections of the various news websites which reported her death, can't fail to notice how many of her fellow acromegaly sufferers viewed her as an inspiration.

MRSA Eradication Protocol a.k.a Massive Hassle

So before having my pituitary surgery, I went for a pre-operative assessment at the hospital, which mainly involves blood tests, sitting around in waiting rooms, and being asked lots of questions by nurses. It also involves being swabbed for MRSA.

MRSA stands for methicillin-resistant Staphylococcus aureus, which basically is any form of the Staphylococcus aureus bacteria which has evolved resistance to standard antibiotics. It's no more virulent than your standard S. aureus bacteria, just harder to treat - and many people carry it around on their skin or in their nose or throat without suffering any adverse effects.Unsurprisingly, it's very bad news in hospitals; if it infects open wounds it can cause potentially fatal blood poisoning or endocarditis. So, before you're admitted to hospital they swab you to find out if you're carrying MRSA.

So far, so standard; that all happened last time I had pituitary surgery. The difference was that this time, about twenty minutes after I'd done the swabs, a nurse dashed into the room where I was chatting to the surgeon, handed me a bottle and a piece of paper, and dashed out. Upon closer examination, it was a bottle of octenisan, which is an antimicrobial body wash used to eradicate MRSA . No-one seemed clear on whether or not I actually had MRSA on my skin or not - it was only when I got into the hospital for surgery a week later that I found out I had been MRSA negative. It seems all the neurosurgery patients had been given the body wash, as a precautionary measure.

And my god, was it a hassle. It would probably be fine for lots of people, but I own precisely two towels and two sets of bed linen, and the "eradication protocol" requires not only that you use the body wash every day, but that all linen, clothes, towels etc. are freshly laundered too. This meant a hell of a lot of laundry every time I got home in the evening; on top of which, you have to leave the body wash on your skin for at least a minute, which required quite a lot of bravery in our icy cold bathroom.

Obviously I'd much rather go through all the hassle than end up infected by MRSA, or give it to anyone else - but my word it has made me resolve to buy some more towels...

Ear, Nose, and Throat

When I got my appointment to see the ENT people, I learned a new word. Not panjandrum (although that is another new word I learned recently and haven't had the chance to trot out yet) or fissiparous (likewise), but otolaryngology. Which, it turns out, is the proper name for Ear, Nose & Throat. I had always vaguely wondered why other medical departments got to use such fancy names - cardiac for heart, renal for kidney etc - while the poor Ear, Nose and Throat people were stuck with a name that sounds like an extended edition of the popular children's song "Heads,Shoulders, Knees and Toes". Turns out they do have a fancy name after all. Who knew?

So I went to see the otolaryngologist. I went into his office and he asked about the problems I've had with my nose and sinuses since my first operation - I still use a nose spray twice a day because otherwise it's too painful. He was very nice, right up to the point where he announced he was going to put a camera stick up my nose.*

Firstly I had to have a topical anaesthetic, which was administered as a nose spray. It went right down my nose and numbed the back of my tongue as well, which not only felt incredibly strange but tasted revolting. Then after giving it a few minutes for the anaesthetic to work, out came the camera stick which was slowly fed into my left nostril. It wasn't too bad at first, although it was incredibly freaky to see quite a long stick disappearing into my head. I felt like one of those "human blockhead" circus sideshow acts where they hammer nails into their nose, except it was uncomfortable enough even with topical anaesthetic that I can't imagine volunteering to do it without one.

Then once the camera was at the back of my nose, the otolaryngologist started poking around more, and that was genuinely painful; it was quite hard to keep my head still and my eyes were watering. Then of course, he had to do the other nostril.

The good news was that there's nothing much wrong with my nose, although part of one of the structures inside (I cannot for the life of me remember what he called it, and Google has been no help) has ended up knocked sideways, probably from the surgery. I just have to keep using the nose spray I already take, indefinitely. It may eventually clear up, or it may not.

Then after the pituitary surgery, I'll go in to have a check up with ENT once I've healed up. After the operation I have to use a nasal wash, which sounds pretty gross - basically it involves putting saline solution up one nostril from a little pot and rinsing it around inside your nose. Eurgh. I have heard of this before, I believe it's quite common in India and Pakistan and that part of the world - I believe in Pakistan recently there was an outbreak of cases of naegleria fowleri, a particularly nasty brain-eating amoeba (no, I'm not making this up) as a result of people using water that hadn't been boiled to wash out their noses.

So the moral of the story is: boil the damn water.

Ahem.

Anyway, then I returned home to regale my housemates and boyfriend with the story in glorious technicolour detail, by which time thankfully the anaesthetic had mostly worn off and my face was starting to feel a lot more normal again.

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* N.B. In fairness, "camera stick" is not the term he used.

Round 2 With Neurosurgery

So, back to the story of my various experiences way back in November! A mere two months late...

On the 5th November, I had an appointment at the Neurosurgery clinic - as I discovered less than a week beforehand. I had been very nervous about it, but I turned up at the hospital on time, and went through the strange procedure in Neurosurgery where they seat you in one waiting room for five minutes, then lead you through to a second waiting room further along the corridor shortly afterwards. The last time I had apre-surgery appointment with Neuro, I was kept waiting for about three hours, so I had come prepared with su-dokus and a lengthy novel - but amazingly this time I was only there for around twenty minutes.

 My second surprise when I was shown in to see the surgeon was that he was actually the surgeon named on my paperwork; previously when I went to meet the surgeon, I just met a member of the surgical team, not the leading surgeon dude himself. But there he was, complete with a trainee doctor who was shadowing him for the week. It's a teaching hospital, so I'm quite used to having an assortment of medical students sitting in on my appointments; the highlight was probably a charming exchange student from Japan who was assigned to the endocrinology department. When an endocrinological emergency meant that we were sat alone together in my endocrinologist's office for twenty minutes, he admitted that he had no desire to become an endocrinologist himself, but we did have a very nice chat about Japanese medical schools.

So, I sat down and the neurosurgeon mentioned the results of my recentMRI pituitary scan, and seemed surprised to hear that no-one had told me about them. Back when I first became a patient, when I had an MRI someone was guaranteed to phone me and let me know the results, but alas in recent times this seems to have completely fallen by the wayside, and it's so much hassle trying to call up and find out myself that I tend to just wait until my next appointment to find out.

It was good news; the pituitary tumour hadn't grown since the previous scan in July, and in fact if anything they thought it might have reduced in size slightly, although it's difficult to tell with these things unless it's a substantial change. I had the scan at the end of October, by which time I'd been on my lanreotide injections for two months continuously, and before that I had an injection in August which lasted for a month, followed by a month without medication before the injections started again. So it looks like they were effective at controlling the pituitary tumour growth, which is excellent news! Although I've had the injections before, they've never really looked at whether they had an effect on the size of the tumour by scanning a "before and after" shot, which is something I've found a bit strange, to be honest.

Despite that, the neurosurgeon was (perhaps unsurprisingly) keen to press on with endoscopic transsphenoidal surgery. The risks are largely the same as last time, although slightly increased as it's a second surgery. There's about a 15% chance that surgery will leave me with hypopituitarism - i.e. unable to produce one or more pituitary hormones. The most likely one to go would be thyroid stimulating hormone, as that's what the tumour produces, but it could be anything. Any hormone that I can't make would need replacing with medication (except possibly growth hormone, which they don't tend to replace unless strictly necessary), which I'd probably have to take permanently (although it depends; some people develop hormone deficiencies right after surgery and then recover). I'll be back on the steroids after the surgery until it's clear that my pituitary is producing ACTH (adrenocorticotropic hormone) again. Last time I was given a pill slicer when I left hospital, which I managed to lose, to my great regret - I'm secretly hoping I'll get another one.

There's also a slight risk of waking up with permanent double vision. The surgeon told me that he "can't remember" the last time this happened, but until I see a certificate assuring me that he doesn't have any kind of early-onset dementia, I refuse to be entirely reassured. It's because the tumour is now over to one side of the pituitary and surgery will thus be taking place closer to various important eye nervy things. I hope I'm not confusing you with all this technobabble.

It's a slightly different type of surgery I'll be having this time, endoscopic transsphenoidal surgery, which takes a bit longer but should have better results. I'll be under anaesthetic for longer, so probably will have more side effects from that and take longer to get over the anaesthetic. On the plus side though, they might not need to put packing in my nose afterwards, which would be awesome, because having the packing taken out last time was So Not Fun. However, I bled oozily from the nose for like three days last time and had to wear a hilarious moustache made out of bandages to catch all the blood (sorry for the TMI) for several days, so I guess I might be one of the unlucky cases who still needs packing. But oh my goodness, it would be nice not to have it.

Anyway, the whole consultation didn't take very long at all really, I couldn't think of any good questions, so I went home. The very next day, I was off to see the Ear Nose and Throat people... and have a tiny camera pushed up my nose. But more on that next time...

How Not To Get A Date

So there's quite a lot of catching-up to do, given that I have been a bad pituitary blogger for the past month and a half and yet quite a few highly relevant things have happened, including meeting with the neurosurgeon and Ear Nose and Throat people (who are apparently more properly called Otolaryngologists - who knew?) and finally getting a date for surgery. I shall start at the very beginning...

At the beginning of November, my next injection was due. You probably know by now that I need monthly injections of lanreotide, a somatostatin analogue, to suppress the overproduction of thyroid stimulating hormone by my pituitary tumour. These injections are delivered into my hip via the medium of a really big needle. It's so big I'm pretty sure a camel actually could pass through it.*

One of the nurses greeted me when I arrived, took my bloods and then went to get the injection. Then something happened which had never happened before.

"Would you like any freezing spray?" she asked me.

I was nonplussed. Previously, I had always associated freezing spray with childhood trips to the Irish seaside, not hospitals. I had to ask what it was.

"Oh, it's just a spray which freezes the skin before an injection," the nurse explained.

Those who know me well will know that one of the few things I like less than injections is being cold. "Sounds unpleasant," I said.

"Yes, it's quite painful," the nurse said breezily. "But some patients still prefer it."

Now at this point, I admit perhaps I should have smelled a rat. No other nurse had ever offered me freezing spray prior to one of these injections. But I wasn't worried.

Like a fool.

Most nurses, when they do this injection, hold the needle (did I mention it's massive?) against your skin and then gently press it in. Not this nurse. Instead, she opted to hold the needle some distance away from the injection site, then take a great swing and stab me with it. It was considerably more painful than usual, and I bled a lot more than normal as well.

I can see why her patients usually ask for freeze spray.

So, I promptly became the proud owner of an excitingly multi-coloured hip bruise, which lasted for three weeks before finally fading just before I was due the next injection. I actually did try to take a photo to show you all but it just came out as a blurry smoosh. For a couple of days I couldn't even lie in bed on that side without wincing.

Anyway, that anecdote was by way of being an aperitif to the main cock-up that I encountered on that trip to the hospital. While my hip was bleeding gently, one of the endocrine nurses asked if I'd heard
anything from the Neurosurgery or Ear Nose & Throat departments, who were supposed to be getting in touch with me about my impending surgery. I explained that I'd still heard nothing and that despite my attempts to call them I'd never got through to speak to an actual human being, and they'd never returned any of my messages. The nurse went off, had a look at her computer, and returned to tell me that I'd had an appointment with ENT. On the 26th October. Which was four days previously.

I also had an appointment booked in on the 5th November with Neurosurgery which I knew nothing about, and ENT had written to me to rearrange my missed appointment for the 6th November.

They'd been writing to my old address.

I still don't have the faintest idea how it happened. As soon as I moved house, I duly phoned the hospital and updated them with my new address. Not long afterwards, I received an appointment from the MRI Department at my new house. I sighed a deep sigh of relief in the happy knowledge
that my details had been successfully updated... and it never occurred to me that they might be sending appointments to my old address.

Obviously I am also slightly put out at my former housemates, who knew I was going to have surgery and who I'd asked to forward on any hospital-looking letters, or even just let me know if they arrived so that I could drop by to pick them up. But how the hospital could get it right... and then revert to getting it wrong, I have no idea. It's not the first time it's happened, either - avid readers will recall that information about a ream of tests I had to have in July was sent to my old address despite the fact that I'd not lived there in four months and all my other letters had gone through correctly.

So obviously, I was very upset about this. I had been doing everything I could to find out
about my appointments, and no-one ever got back to me. You have to wonder how many appointments I would have had to miss before anyone bothered to do so.

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* Hell yeah, I'm cultured.

Growth Hormone and Creutzfeldt-Jakob Disease

It's National Pituitary Awareness Month, and I thought I should look for an interesting pituitary-related story to tell you all. As it turned out, I didn't have to look too far.

 Most people living in Britain today will remember the 1996 scare about "mad cow disease" or BSE (in cows the disease is called Bovine Spongiform Encephalopathy; when it's passed to humans it's variant Creutzfeldt-Jakob Disease or vCJD). It’s an extremely nasty degenerative brain disease, invariably fatal, and there was huge concern that beef contaminated with the disease had been in the food chain for some time. The illness can have a latency period of up to ten years before symptoms appear (or much, much longer according to some researchers), making it very difficult to trace the cause of the illness - and meaning that no-one has any definite idea how many people could have been infected. As of October 2009, there had been 166 identified cases of the illness in the UK.

Beware! This could be a mad cow.

It was a huge scandal in the UK, and I remember as a child being disappointed that I wasn't allowed to eat roast beef for what felt like a very long time - although admittedly this was less because I loved roast beef and more because I loved the accompanying Yorkshire pudding my mum served with it. But until recently I was not aware of a similar, albeit smaller-scale scandal that had occurred several years earlier.

Between 1963 and 1985, the US Government funded a programme which provided human growth hormone to children across the US who had failed to grow as expected. Failure to grow in children is sometimes due to a deficiency in growth hormone (surprise!) and this is still a treatment for children today; the difference is that these days it's made in a lab, while at that time it was extracted directly from the pituitary glands of human cadavers.

In 1985, it came to light that three of the people treated with human growth hormone (hGH) had gone on to die of Creutzfeldt-Jakob Disease. This is not the same illness as vCJD but it is similar - and it's very, very rare. The programme was stopped immediately and an investigation launched.

To date, 29 of the people treated with hGH in the US before 1977 have been diagnosed with CJD. That's about one in 95. The rates were much higher in some other countries; in the UK, which produced its own hGH, 64 of the 1849 people treated developed CJD; and in France, which also produced its own hGH, 119 out of 1700 patients went on to develop the disease. There have been cases reported in numerous other countries; the variation in incidence is likely due to the variation in the way the hormone was extracted and processed.

 The longest latency period recorded between someone receiving human Growth Hormone and going on to develop CJD is 38 years. The shortest period before developing symptoms with these kind of diseases is usually around 2 - 3 years. The symptoms progress very quickly, within just a few months, from dizziness, difficulty balancing and clumsiness to memory loss, seizures and death.

Most disturbingly of all, however, it later came to light that far more of the patients who had been treated with hGH went on to die of adrenal crisis - an entirely treatable problem - than of CJD. This problem isn't caused by the hGH treatment, it's simply the case that people with a growth hormone deficiency are more likely to also be deficient in other pituitary hormones, such as ACTH. Without sufficient ACTH, you will die - but safe and effective hormone replacement is available for people whose bodies don't produce enough ACTH. It's simply that their doctors failed to pick up on the fact that these people were ACTH-deficient until it was too late.

IMFW: Thyrotoxic Period Paralysis

Today's Interesting Medical Fact of the Week is about thyrotoxic periodic paralysis, a curious malady occurring mainly in men of Japanese, Vietnamese, Chinese, Korean Thai and Filipino descent - and Native Americans are also at greater risk, as they share a genetic background with East Asian people. The condition causes attacks of muscle weakness and paralysis and usually occurs in the presence of high thyroid hormone levels (hyperthyroidism) and low potassium levels (hypokalemia).

The attacks of paralysis can be brought on by exercise, drinking alcohol and eating food high in carbohydrates or salt, and they can be dangerous if they lead to respiratory failure or irregular heartbeat. This condition can be treated by first correcting the hypokalemia, then the hyperthyroidism; once treatment has achieved normal thyroid levels, this usually leads to a complete resolution of the problem.

Thyrotoxic period paralysis is commonly associated with Graves Disease, although other illnesses which lead to high thyroid levels (including TSH-producing pituitary adenoma... yay!) can also cause the condition. It's not fully understood and there is still confusion over why males are predominantly affected despite the fact that overactive thyroid problems are more common in women.

Please Sir, Can I Have My Medication?

Regular readers will remember that earlier in the year I was lamenting the fact that my stupid GP's forced me to change GP surgery after I moved a few minutes down the road, due to their weird practice boundaries. At first I thought this was just Massively Inconvenient And Stupid, but in fact it's gone on to have far more serious ramifications.

At present I am thyrotoxic; I have way too much thyroid hormone sloshing around my body, because my pituitary tumour is producing a hormone which is overstimulating my thyroid gland. It has been getting noticeably worse recently; over the past few weeks I have had to up my dose of the beta blockers I take to control my excessively fast heartbeat from 1 - 2 per day to 2 or more frequently 3 per day. I'm noticeably more jittery, I get shaky hands sometimes, I'm getting much more tired more easily. I feel pretty rubbish right now.

The medical universe strongly agree that I need to go on lanreotide injections to stop the tumour producing thyroid stimulating hormone immediately. Like right now. Like actually we should probably have put you back on them at the start of July.

They do not agree on who should pay for it.

My injections are expensive; they cost about £750 a pop (one injection lasts for four weeks, so they cost about £27 a day). My old GP noted that they were more expensive than uranium, but he went on and prescribed them anyway.

My new GP noted that they were more expensive than uranium, and that they are now on our PCT Red List.

The Red List is a list of drugs that should only be prescribed by a specialist, not a general practitioner. It has been suggested that more PCTs are red-listing more drugs to make savings cuts. I could not possibly comment on that. What I do know is that despite the fact that my specialist endocrinologist requested my new GP prescribe them, this is apparently not enough, and after consulting with the PCT (primary care trust) she was unable to do so. The problem is complicated by the fact that the long-acting form of the drug I need (Somatuline Autogel) is not technically licensed for my condition (TSHoma). The older, short-acting form is licensed, but it only lasts ten days, and who wants injections every ten days? Essentially this is just wrangling, but my GP doesn't want to be held responsible for prescribing an unlicensed drug for me, should anything go wrong. She is playing by the book, which is a stance I can sympathise with.

Fortunately the day after I first found out about this issue, I went into the hospital for an appointment and informed my various endocrinologists of the problem. They immediately requested that the specialist nurses order in the first dose of the drug for me so that I could have it administered as soon as possible.

The nurses already have the syringe full of delicious lanreotide. It came in yesterday.

I could have had the injection yesterday. I could have had it today. I could even have it tomorrow, but I don't know if I will - because even though the first dose has been bought and paid for and is SITTING IN A FRIDGE WAITING FOR ME, they are wrangling about who should pay for the next dose.

The next dose.

WHICH I DON'T NEED TO HAVE FOR FOUR WEEKS.

The nurse was super apologetic when I called up to find out what the heck was going on (as I had been told I would probably have it yesterday or today but hadn't heard anything) and she's basically spent the whole afternoon trying to find out if she can just give me the damn injection already and work out where the next one is coming from afterwards.

There is no question that the NHS wants me to have this drug. It's the drug I need, I've had it before, plenty of other patients with my condition have had it before, it works, the licensing issue is really just a wrangle and they reckon the drug company is hoping to get it licensed for TSHoma soon anyway. All the people actually involved in my care want me to have this drug as soon as possible because being this thyrotoxic is Not A Good Thing. But no-one wants to pay for it. Which is ridiculous because it's public damn money. If the hospital pays for it, if my GP's pay for it, it doesn't matter - the net effect on the public purse is exactly the same.*

So please can I just have the damn injection already?

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*Although in fact, it would probably be cheaper to the NHS overall for me to have it administered by a nurse at my GP's practice rather than an expensive and specialist endocrine nurse at the hospital whose time is probably more valuable.**

** And more expensive if my thyroid gland goes into overdrive while I'm hanging around waiting and sends me into a coma.***

***Very unlikely but actually not entirely impossible.

Failing Treatment: Patients, It's Your Fault

One of the things you notice, once you've been around doctors and hospitals for a while, is the way that medical terminology sometimes seems to place a slightly unreasonable amount of blame on the part of the patient.

For example, the website for Korlym, a drug used to control high blood sugar in patients with Cushing's syndrome, states that Korlym is used "in adults with endogenous Cushing's syndrome who have type 2 diabetes mellitus or glucose intolerance and have failed surgery or cannot have surgery".

1.) I wasn't aware that surgery was a test.

2.) Surely if it were a test, the person charged with passing it would be the surgeon, not the patient zonked out on the operating table.

It seems strange to me that they went for this phrasing (and not as a one-off either, it appears elsewhere on their website). Would it really be difficult to say "patients whose surgery was unsucessful" or "patients whose surgery did not effect a cure"? It's not an isolated case restricted to one copy editor on one website either; it's fairly common to read things like "the patient failed chemotherapy"/"radiotherapy"/"to tie their shoelaces that morning, leading to chaos on Ward Five."*

Doctors of the world, please note: patients don't fail treatments.** Treatments fail patients.

It's an entirely obnoxious phrase, and when I started researching the question it was heartening to see that I am by no means the only person to object to it. As if patients don't feel crappy enough after discovering that their treatment has not succeeded, it then seems to be implied that this is in some way their fault. Yes, it's a medical convention; no, doctors don't mean to imply that the patient is to blame for the treatment not working. But as this patient points out, it's an entirely unnecessary little phrase which can serve to undermine the doctor-patient relationship. Patients who are not au fait with medical terminology - i.e. almost all of us - are unlikely to be impressed if they hear it.

There are plenty of problems out there in the world which are far more serious and important than this little question of syntax. But is it really so hard to change "[Patient Y] failed [Treatment X]" into "[Treatment X] failed [Patient Y]"?

***

UPDATE: So, there's a twist to the tale! I wrote to Corcept Therapeutics, Korlym's creators about this, because I'm pushy that way, and their Director of Commercial Operations got back to me like a bolt of extremely speedy lightning, - despite the fact that I do not have Cushing's Syndrome and thus am hardly their target audience. Here's a couple of extracts from his email:

"Our intent was certainly not to place any blame on the patient for the surgery’s failure, but I can certainly see how the words could convey this. [...] In the world of pharmaceutical marketing and communications in the US, we are highly regulated regarding what we say and how we say it, among other things. For many things, we use language directly from our FDA provided Full Prescribing Information (also known as the label or package insert) and Medication Guide. These two FDA provided documents use the exact language  “patients who…… have failed surgery”. In the case of our website copy, we picked up the language directly from these documents.

"I think we have room to improve the language, using language that you suggest, or something similar. We have a compliance team that meets semi-regularly to review our communication material. At a point in the near future, we will review this language change, in hopes to get it approved for a future website update."

So thank you very much, Corcept, and the moral of the story is this: if there's something you don't like, don't keep it to yourself - whinge!

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*Well, maybe not the last one.

**Unless of course they're non-compliant with the treatment regime. In which case, have at them.

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.

***

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 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.

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* 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.

IMFW: The King's Evil

Recently, the UK celebrated the Queen's Diamond Jubilee, marking sixty years of her right regal reign. At some point over the weekend, I made a joke about scrofula - that most historical of diseases - and no-one got it. Now, people often don't get my jokes, and I'm sorry to report that approximately 70% of the time this is because they are Not That Funny. However, the other 30% of the time they are absolutely hilarious, and this was one of those times. Consequently I was forced to the conclusion that either 1.) my friends are, to a man, ardent royalists who refuse to laugh at an old lady purely because she has an unusually heavy and unfashionably metallic hat, or 2.) they didn't know what scrofula was.

And so, in the interests of education, this week's extremely overdue Interesting Medical Fact of the Week will focus on scrofula, a.k.a. the King's Evil, a.k.a. tuberculous cervical lymphadenitis - and how's that for a rapper name?

Scrofula is effectively tuberculosis of the neck, resulting in swollen lymph nodes. In children it is often caused by infections other than mycobacterium tuberculosis, but when tuberculosis is the underlying cause, there are also associated symptoms of fever, weight loss, and malaise. It's a very unsightly illness; the swelling of the neck can become so large that the skin around it ruptures, leaving open wounds.

With the huge decline in tuberculosis rates over the past sixty years, scrofula has become a rare disease, except among the immunocompromised, but historically it was much more common. For hundreds of years in England and France it was commonly believed that scrofula could be cured by the touch of a king,* and indeed monarchs would hold huge events in which they touched hundreds of scrofula patients. From 1633, the Anglican Book of Common Prayer even included a special service for the ceremony, and it was traditional for the monarch to give the affected person a coin. Kings and queens varied in how far they were prepared to go with this tradition, however; although Queen Anne (r. 1702 - 1714) was fond of helping the scrofulous and even touched a young Samuel Johnson, who suffered from the illness, her successor King George I (r. 1714 - 1727) abandoned the practise as being "too Catholic" and also, presumably, too gross.
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*Queens were an acceptable alternative for the scrofula sufferer on a budget.

Morning brain is stupid brain.

Long time no blog! I apologise profusely, please forgive me. I blame exams and the subsequent having-of-fun after them. Anyway. Resuming regular service.

So yesterday I called the hospital again and expressed my unhappiness at the fact that, six weeks after the appointment in which I was told I would be contacted in a few days, I still had not so much as heard from them. By now I was supposed to have had all my tests and be back on lanreotide.

This morning - a phone call from the pituitary endocrinologist! Who managed to call me at the exact same time that my alarm usually goes off in the morning. My sleepy brain couldn't work out why the alarm wouldn't snooze in the usual way, when suddenly I realised it was a phone call. Panicking, I tried to answer it using the touch screen (instead of just pushing the big green button before my eyes). The touchscreen - as usual - sulked and refused to function so early in the morning.* So I missed the phone call but did get an answerphone message saying he would call back and he apologised for the "unexpected delay" in getting back to me.

So now I am once more waiting… interminably waiting...
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*Much like my brain.

*Censored* (A Rant)

Oh god, I hate hospital administration systems.

Two weeks ago, I went to the hospital. My doctors wanted to keep me off my medication for 6 weeks, despite the fact that this would worsen my symptoms, so that they could run some tests and do some scans while it was out of my system. They said they would arrange for one of their research people to call me and arrange the tests. I pointed out whilst I was standing right there with them that as I have exams and a holiday coming up, there would be some dates I couldn't do, but that I could write these dates down and hand them over immediately so as not to waste time.

No, they said, that's fine. I would get a telephone call in the next couple of days, no worries.

Two weeks later, no bloody telephone call, and I'm going on holiday for a week tomorrow. I don't have a number I can speak to any of them on directly, the best I can do is call one of the doctors' receptionist, who is only in for three mornings a week. So I called her yesterday morning and left a message pointing out that if they wanted to arrange these tests before I left, they would need to get their freaking act together.*

Today at lunchtime I managed to miss the receptionist returning my call. There were no apologies for the massive delay; she left a message saying there was no prospect of getting me booked in today and that I should call back on my return from holiday. There was also no explanation of how this went from being the hospital's responsibility to call me to being my responsibility to call the hospital.

Sadly, I am incapable of shouting swearwords at my phone loudly enough to make myself feel better.

It is so unbelievably frustrating that this seems to happen almost every time anything hospitacular has to be arranged. Oh, your surgery's postponed at the last minute. Oh, your surgery's now back on with less than 24 hours notice. Oh, your letter got lost in the mail. Oh, didn't I mention that you're going to be booked in for an overnight stay? Oh, your MRi appointment never got booked? Well there's no point in you sitting here in this neurosurgical aftercare appointment then! Bye!

This means that three weeks will have gone by before I get booked in for ANY of these arsemongering tests and scans. On my return from holiday, I have exams. Essentially, this "six week period off medication" just got extended to an "indefinite period until we can be bothered to get back to you, lol." They really have no clue how shitty it is to seesaw on and off taking this stuff. Every time I start/stop taking it, there's a bunch of side effects - it messes up my skin and appetite and stuff - on top of the symptoms I get anyway when I'm not on it (heart too fast, hair falling out, etc. etc).

In my now-lengthly experience, it seems that hospital doctors are completely clueless about the barrage of administration that patients have to maneuver through in order to ever actually see them. Once, a letter that was sent to me giving a time and date for an MRi scan was lost in the post. I knew I was expecting an appointment, so when I didn't get a letter, I called the endocrine department, the MRi department, the main hospital switchboard and even I think neurosurgery for good measure, to try to find out if an appointment had been booked. Everyone told me they had no idea, had no means of finding out, and no clue who I should speak to - except the MRI department, who told me that I definitely didn't have an MRi booked. About two months later, the letter eventually turned up, by which time I'd obviously missed it. At my next appointment with my endocrinologist, he actually attempted to give me a telling off for missing an appointment, and then clearly refused to believe me when I explained what happened.

Well, this has been a massive rant. I do feel slightly better. But I am still pissed off.

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*Except obviously I was politer than that.

IMFW: Nodding Disease

For today's Interesting Medical Fact of the Week, we're going to get a little bit Agatha Christie. I love Agatha Christie, because a) I love mysteries and b) I'm an old granny at heart. But in terms of mysterious illnesses, this one takes the biscuit.

So-called nodding disease (or nodding syndrome) was first described in the mountains of Tanzania in the 1960s. Since then, it's spread to areas in south Sudan and northern Uganda. It's an extremely serious progressive disease which only affects children, and it's almost always fatal. There is no cure. And no-one is even sure what causes the illness.

The symptoms of nodding disease include complete and permanent stunting of growth, including development in the brain, which leads to mental retardation. The name of the illness comes from the characteristic seizures suffered by affected individuals, which cause their heads to nod rapidly; the only treatment currently available for nodding syndrome is epilepsy drugs which can help to control these seizures. Extra weird is the fact that these seizures seem to happen most commonly when the child begins eating or feels cold. Children become severely malnourished because they are frequently rendered unable to eat. Many children with nodding disease actually die from falls or accidents like drowning or burning, which they're at higher risk of because of their mental impairment.

At the moment, the hypothesis that seems most likely to explain this disease suggests that it may be linked to river blindness (onchocerciasis), an illness caused by a kind of parasitic worm which is transmitted to humans through the bite of the black fly. Cases of nodding disease are concentrated in areas where there are high levels of infection with the river blindness parasite and it seems there may be a link, although no-one's yet worked out what it is. There may also be a link with low serum concentration of the blood.

There is a little bit of good news. The mysterious illness has attracted some international attention, and this week Uganda opened its first treatment centres specifically for children with nodding disease. At the moment, though, the best they can aim for is to control the illness's symptoms.

A New Treatment for Cushing's Disease?

I've just been reading about a drug called Pasireotide. It's been around for a while, but on January 23rd this year, the European Medicines Agency's Committee for Medicinal Products for Human Use recommended that pasireotide be approved for use in the treatment of Cushing's Disease. This is exciting, because Cushing's Disease - in which a benign tumour of the pituitary gland causes the body to release excess steroid hormone - has long been very difficult to treat medically, with surgery and radiotherapy being the main treatments. But they're not always appropriate or successful for every patient.

Pasireotide (brand name Signifor, developed by Novartis) is a somatostatin analogue - like the medication lanreotide, which I take at the moment to prevent my own pituitary tumour from releasing thyroid-stimulating hormone. Like lanreotide and octreotide, the two somatostatin medications currently on the market, pasireotide looks likely to be effective in treating acromegaly and neuroendocrine tumours; unlike them, it appears to be much more effective at blocking tumours from producing adrenocorticotrophic hormone.

At the moment, there are no approved medicines in Europe for the treatment of Cushing's. Other drugs are used in practise, off-label, but with less data about their safety and effectiveness against the disease, so for Signifor to be approved would be a very significant step. The European Commission looks set to make its decision in the next few months.

Happy Rare Disease Day 2012!

Happy Rare Disease Day 2012! Yes, it's that jolly time of the year again, when families across the globe gather together to celebrate the myriad exciting ways in which the human body can baffle trained physicians. This year is extra special, as the fifth international Rare Disease Day falls on the 29th February, the rarest calendar date of them all. The event focuses on extending solidarity, both between patients with different rare diseases, and with society at large.

I already have a rare disease (in fact, I technically have two: TSH-oma, and hypermobility syndrome, which is now classified as a subtype of Ehlers-Danlos Syndrome. But although my hypermobility causes joint pain, it also gives me nice soft skin, so I guess you have to take the rough with the unusually smooth). I am aware, however, that many of my more healthy readers may be feeling a little left out of the rare disease jamboree today.  Most rare diseases are genetic - and it's very difficult to know in advance whether you're harbouring the kind of genetic anomaly which will allow you to get better aquainted with the medical profession. So, in the interests of this year's Solidarity theme, and in case you really are that desperate to join in, I have prepared a list of my top four rare diseases that you don't need mad genes to develop. All you have to do is pick one, and get infected:

Top 4 Rare Non-Genetic Diseases

1. The Bubonic Plague
In the West, bubonic plague is now extremely rare, although the plague killed millions in the Middle Ages. Globally there are about 1000-3000 cases reported by the WHO every year. Modern antibiotics are an effective treatment if administered quickly.
Upside: This one has a pleasingly retro feel. There's nothing like walking into a conference of medieval scholars and announcing you've survived the Black Death.
Downside: Gangrene of the extremities, seizures, vomiting blood and extreme pain.
Will I die? Mortality is 1-15% in treated cases. In untreated cases, it can be up to 90%.
How do I catch it? Usually through being bitten by an infected flea.

2. Guinea Worm Disease (Dracunculiasis)
Warning: this disease is available for a limited time only.
A global eradication effort began in 1980. In 1986, guinea worm was endemic in 20 countries, with 3.5 million cases across the world every year. In 2011 only four countries were still endemic for guinea worm disease, with 1,060 cases globally.
Upside: If you time it right, you could be one of the last people in the world to have dracunculiasis. And there's got to be a certain number of TV interviews in that.
Downside: After catching it, guinea worm has an incubation period of a year before the worm starts to travel down through the leg, causing immense amounts of burning pain, fever, nausea and monitoring. It then emerges from the skin. There's no treatment and the only way to remove the metre-long worm is to wrap the live worm around a stick and slowly wind it out - a process which can take months. And frankly: eew.
Will I die? Unlikely. Risks are that the wound where the worm emerges may become infected, or if the worm is broken as it's being pulled out of the skin, it may putrefy inside the limb.
How do I catch it? Drink water contaminated by water fleas which are host to guinea worm larvae - still available in South Sudan, Ethiopia, Chad, and Mali!

3. Kuru (Laughing Sickness)
The last known sufferer of kuru died in 2005, so catching this one may be tricky. Kuru was an epidemic amongst the Fore tribe of Papua New Guinea, due to their cannibalistic funeral practices, but unknown elsewhere. It's believed that the disease originated with an individual who spontaneously developed Creutzfeldt-Jakob Disease, a degenerative neurological disease caused by proteins called prions. When his or her body was consumed after death, the disease spread amongst the Fore, and there was a continuous cycle of new infections as sufferers were eaten after dying from the illness. Once cannibalism stopped, the disease began to die out, but because it can have a very long incubation period, new cases cropped up every now and again until 2005.
Upside: The last known sufferer died in 2005. A new patient would be a medical celebrity.
Downside: Everyone would know you're a cannibal. Oh, and you would slowly completely lose control of your body, develop severe tremors and emotional instability, become unable to speak or swallow, become incontinent, and acquire sores and necrotic ulcers.
Will I die? Yes. There is no cure. The good news is that you may have an incubation period of up to 40 years before symptoms develop. The bad news is that you will die about a year after that.
How do I catch it? You need to eat part of the body of someone with the disease (preferably the brain, if you can get it), or allow broken skin to come into contact with the blood or brain matter. Or you could inject yourself with it. But where's the fun in that?

4. Brain-eating Amoeba (Naegleria fowleri)
This is a nasty little unicellular parasite which is actually pretty common in warm, stagnant freshwater worldwide, but can invade the central nervous system via the nose, and then into the brain where it causes primary amoebic meningoencaphalitis.
Upside: You'd definitely make it into the local paper. Only 300 confirmed cases had ever been recorded in the medical literature by 2008.
Downside: Headache, vomiting, delirium, seizures and irreversible coma.
Will I die? Almost certainly. As of 2008 the in-hospital case fatality rate was 97%.
How do I catch it? Your best bet is swimming in infected water, or preferably by using a neti pot; weirdly, water that is safe to drink may not be safe to irrigate your nose with. But remember: the brain-eating amoeba has to get a long way up inside your nose before there's a chance of infection, so if at first you don't succeed, try again.

For more information on rare diseases in the UK: http://www.raredisease.org.uk/

Get Ready for Rare Disease Day 2012

Rare Disease Day 2012 is tomorrow, the 29th February, and I hope you're all as excited as I am. Yay, diseases!

The definition of a rare disease in Europe is a disease with an incidence of fewer than one in two thousand people. There are thousands of rare diseases, and although each disease is individually rare, taken collectively rare diseases affect 6% of people in Europe and account for 20% of healthcare costs. Rare Disease Day aims to raise awareness of the problem of rare diseases, and the fact that research into treatment of these kinds of diseases tends to be significantly underfunded.

For more information, check out the Rare Disease Day 2012 website, or infect yourself with an unusual pathogen!

Health Update

My poor little blog is really looking quite neglected! Fortunately I had a trip to the hospital yesterday. To see a doctor, I mean, not just for fun.

After being weighed and having my blood pressure done, I was called in to see.... a doctor who is not my endocrinologist. My endocrinologist seems to be displaying classic signs of pathological demand avoidance syndrome, in that every time someone arranges an appointment for him to see me, he disappears. He's been my endocrinologist for seven months now and I've only met him once, in passing, while I was having some blood tests. Perhaps he's put off by the possessive way in which I refer to him as "my" endocrinologist, but if so then he really needs to address the problem, or how can our relationship progress to the next level?*

Anyhow, we went through my latest blood test results and, being the marvel of medical science that I undoubtedly am,** my body appears to have pulled off the neat trick of producing higher levels of thyroid hormone during treatment with a thyroid-stimulating-hormone suppressing drug than before treatment. Apparently they're not concerned, because the tumour does produce quite low levels of TSH anyway and all my thyroid hormone results are within the upper normal range, so the only way they can tell what's going on is to look at the alpha subunit, a particular protein which tends to be over-produced by TSH-producing pituitary adenomas. The test result takes 4 weeks to come through, so we have to wait to find out where I am at the moment. Over the last year or so, though, they were:

Before surgery last April: 13.00
After surgery: 8.40
This January: 5.90

What it's meant to be: 1.00 or less.

So it could be worse, could be better! Fingers crossed that the lanreotide injections are doing the trick. I get to have another MRI sometime soon (they forgot to book it in for me, apparently I was supposed to have one in February) and to go back in 2 months. Oh, and they recommended I be referred to the Ear Nose and Throat team for my stupid malingering post-surgery sinusitis. You know. The sinusistis my GP told me couldn't be related at all to the surgery... oh well. I get to explore another hospital department. Whoop whoop!

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*i.e. the level at which he is actually in the room when I am supposed to be meeting him.

**Shut up, I so am.

IMFW: Poliomyelitis

Long time no Interesting Medical Fact of the Week! In fairness, this is the first time in several months in which I have failed so abjectly to produce an IMFW on a Monday. I don't have any excuse at all, so without further ado:

Today's Interesting Medical Fact of the Week is focusing on Poliomyelitis, commonly known as polio. When I was a child, the combination of the name of the illness and the fact that the vaccine is delivered on a sugarlump meant that I had a vague conception of polio as a round, white germ with a hole in the middle. At least I didn't think of it as a kind of posh horsey bacteria.* Or a car.

Quick recap of polio: it's a highly infectious viral disease. About 90% of people who are infected will not have any symptoms. 5% will have only very mild symptoms, like a cold or 'flu. 1% will have a more serious episode of 'flu-like symptoms, often with muscle stiffness and meningitis. And only about 0.1% of cases will develop paralytic polio, in which the virus attacks the central nervous system and produces the "classic" polio symptoms which most people would recognise: the muscles of one or more limbs become extremely weak and finally paralysed. In cases where the virus invades the bulbar region of the brainstem, it may cause difficulty breathing, speaking, and swallowing.

Although there are vaccines for polio, there is no cure. Patients who are unable to breathe independently can be kept breathing using a negative or positive pressure ventilator until they have recovered, although in some cases polio survivors may need to use one of these devices for the rest of their lives. About half of patients with paralytic polio do recover completely, but around a quarter are left with significant permanent disability.

Since a global effort to eradicate polio began in 1988, the number of annual cases of polio being diagnosed has reduced by 99%. The initial eradication initiative aimed to eliminate polio by the year 2000; twelve years later, the disease is still clinging on in a few countries and is still considered endemic in Afghanistan, Pakistan and Nigeria. The last case in India was in January 2011, and the country is hoping to be certified as free from endemic polio shortly.

Efforts to eliminate the disease in these countries have been hampered by instability, as well as rumours in Nigeria that the vaccination effort was a Western conspiracy to spread HIV and sterilise Nigerian girls. Vaccination was banned for several years, leading to a massive upsurge in infections in Nigeria and the transmission of polio back into neighbouring countries. Vaccination boycotts have also taken place at various times in India; and in Pakistan and Afghanistan the Taliban have issued fatwas against polio vaccination.

In 2011 there were 649 cases of polio reported worldwide, with over half of these from polio-endemic countries, compared to around 350,000 in 1988.
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*Not least because it's a virus.

IMFW: Avast, Ye Scurvy Dogs!

Today's Interesting Medical Fact of the Week is about scurvy! Everyone's favourite pirate-borne illness, caused by a lack of vitamin C. Humans and other higher primates share with guinea pigs and bats the dubious distinction of being some of the few animals to suffer from the disease; most other animals can synthesize their own vitamin C, but we don't produce the necessary enzyme. Consequently, although we always think of fruit and vegetables as the only cure for scurvy, in fact simply eating the meat of any animal which produces its own vitamin C can prevent scurvy occurring and will have enough vitamin C to partly treat the illness. Some organs will contain more vitamin C than others; liver and parts of the central nervous system are particularly high in vitamin C. So if you're stuck on a boat in the middle of the ocean, don't fret about finding lemons - just eat a passing seal. If it's vitamin C you need, though, raw is better than cooked. Yum.

Although the benefits of citrus fruits for scurvy had been suggested time and again by various people, it was James Lind who publicly established that scurvy could be treated through eating citrus fruit in 1747, in what has been described as the "world's first clinical trial"... although that might be taking it a bit far. On a voyage, he divided up twelve scurvy sufferers into 6 groups, and treated each group with a different dietary supplement daily. They all received the same diet but in addition, group one were given cider, group two sulfuric acid, group three vinegar, group four half a pint of seawater (poor group four), group five a daily lemon and two oranges, and group six were given barley water and some kind of spicy paste. He ran out of citrus fruit after just six days, but by that time one of the sailors in group five was restored to health and the other had significantly improved; the only other group to show any improvement was group one. He published his results with a general review of the theories behind the disease in 1753 in A Treatise of the Scurvy.

Lind was a bit of a legend; one of his recommendations when still trying to work out what caused scurvy was for the Navy to grow watercress on big wet blankets on-board ship (watercress is very high in vitamin C); a recommedation which was actually taken up in 1775 and Navy ships were provided with seeds.

Scurvy was only really eradicated from the Royal Navy in the 1790s when the suggestions of Lind and others that lemon juice be used on ships was finally taken up by Gilbert Blane, a Scottish doctor who instituted several health reforms in the Navy. The health of sailors improved significantly as a result, making lemons (and later, limes) an important factor in British successes in the Napoleonic wars.