Back to La Cura

Regular readers who have not grown tired of my recent lack of posting
may recall that a little while ago I posted a link to a website called
Open Source Cure, created by an Italian man, Salvatore Iaconesi, who has
been diagnosed with brain cancer. BBC News has recently done a piece
about the website, which has provoked a huge response in terms of both
medical advice, messages of support and artwork. Apparently the public
reaction to the website and Mr Iaconesi's interactions with various
doctors have influenced the way in which his brain surgery is going to
be carried out, and the Italian government have even picked up on the
site's popularity, and is now looking at opening up patients' medical
records.

It's quite an incredible response to see. Many people, myself included,
turn to blogging as a way of venting the frustrations of being ill and
dealing with hospitals, as a way of updating friends and family on how
we are, and as a way of connecting with other people in similar
situations. When you have a rare illness like thyrotropinoma, it's
seriously unlikely that you'll know anyone who's been through the same
thing in real life, so it's natural to reach out to others online. But the concept of
seeking not only support and tips but also actual medical advice on
treatments and surgical techniques from complete strangers - from the
whole world - is a pretty unique approach. Given the difficulty that
people with rare medical conditions can have in accessing doctors with
sufficient (or indeed any) experience in the treatment of their illness,
perhaps it's something that will become increasingly common.

An Open-Source Cure?

Kudos to my lovely boyfriend for this very interesting link to a website created by an Italian man with brain cancer, who requested copies of his medical files from his hospital  in order to send to other hospitals and doctors for their opinions, only to find that they were in proprietary formats which he could not open on his computer. Being computer savvy, he managed to convert them into open formats so that he can share his information with everyone, online. And he's posted them on his website.

It might sound weird, this idea of posting medical records online, when these are documents that we're used to treating with the utmost confidentiality, but already he has had responses from doctors - and the idea is that everyone is encouraged to use the data to create a cure, whether that's a doctor suggesting treatment, an artist creating artworks, videos, poems... you name it. Other people with similar conditions can send in their own data, if they wish, to be added to the site.

The author of the website had some very interesting thoughts about how the way in which his data is treated parallels the way in which his disease has been treated:

"The data formats which I was "forced" to hack is in a peculiar state of harmony with the common definition of "disease/illness".

The definition of "diseases" is "reserved" to doctors. Often using words which we don't understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.

The DICOM format is open, yes, but in a very "peculiar" condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the "cure": you can't understand it, you can't reuse it, you can't combine it with other possibilities. It is thought for "experts" and "professionals" (of one single type), leaving little space for other possibilites for expression and socialization."

It's interesting to consider the possibility that the sacred doctrine of doctor-patient confidentiality may, in some cases, end up mitigating against patients having the ability to take charge of their own healthcare, or seek the widest possible range of medical opinions on their condition. Now that so many hospital systems and even procedures are digitised, there's clearly a balance to be struck between protecting patients' private information, and making it so inacessible that patients are unable to view their own data.

Historically, medical education and knowledge has been very much the preserve of the privileged few, and patients weren't necessarily expected to understand their own conditions. With the rise of the internet, it's so much easier for patients to be informed about their own illness - some might say too easy - and thus it seems terribly ironic that the same medium enabling greater patient choice and freedom should simultaneously be creating new and unwelcome restrictions on their ability to use their own data in whatever way they desire.

Posting your medical records on the internet for all to see may not be everyone's cup of tea. But it should still be an option if that's what you want to do.

Check it out: http://artisopensource.net/cure/

I Want Acromegaly

As many of you are no doubt aware, I'm the kind of sad and tragic person who has enough time in her life to trawl the internet for other blogs about pituitary adenomas. Due to a weird and extremely irritating Blogger glitch, I'm unable to follow anyone anymore, but I still seek them out.

And two separate sites I found today, both about acromegaly, got me thinking. They got me thinking so much that I suspect I'll have to split my thoughts out across a couple of posts, or risk literally boring my readers to death.

The first was this: a conversation on a forum begun by a guy who claims to want to have acromegaly.

Quick recap: Acromegaly is a serious illness caused by a rare brain tumour on the pituitary gland which releases growth hormone into the blood. It can cause uncontrolled growth throughout the body, especially the hands, feet, chin, nose, tongue and forehead. It can also cause impotence, congestive heart failure, kidney failure, diabetes, loss of vision, and death. It is a devastating diagnosis for those unlucky enough to have it.

I quote:

"I really want to have this condition. I want it because I have a "babyish" face and my facial bones are not as developed as they should be. I'd rather not get cosmetic surgeries such as chin impants and jaw implants. When my face becomes as masculine as I want it to be I'll just get treatment for it.

Also my hands are small for a mans and I'd like to have bigger hands.

[...] How can I induce acromegaly in my body? Is it even possible?"

This guy may be a genuine idiot, or he may be a troll, but the fact is that there really are people fuckwits out there who inject themselves with growth hormone because they think it will make them better at sports/bodybuilding.* These people are effectively giving themselves mild acromegaly, despite the fact that there is really very little evidence that it could improve sporting performance, and it may actually decrease stamina despite increasing muscle mass.

Those of us cursed with epic fail bodies that go haywire at the slightest provocation tend to strongly resent it when fit and healthy people take risks with their health and fitness for the purpose of vanity. When I was having the packing removed from my nose after my brain surgery, and it was incredibly painful and there was blood everywhere,** the first thought that went through my head was: "Why would anyone ever have a nose job by choice?" (Plus, as a person who regularly has health professionals sticking needles in me, I can't get my head around someone actually volunteering for human pincushion duty).

Going around saying that you want to have acromegaly to gain a better jawline is like saying you want to get cancer so you can lose weight. Not only is it incredibly disrespectful to those people who seriously suffer with a horrible illness, it's just incredibly stupid. Injecting yourself with growth hormone so you can stand on a stage with a bunch of other people and flex your muscles impressively... words fail me. Not only are you putting your body and your health at risk, but you're cheating. All the other hard work you did to get those muscles is wiped out. You didn't win because you happen to be the muscly guy who worked the hardest and had the best muscly genetics out of all the hardworking muscly guys with muscly genes; you won because YOU'RE A DUMBASS.

Actually got surprisingly angry writing this! My next post on the topic of acromegaly, Cushing's disease, and physical appearance is coming soon...

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*I recommend clicking on that link and scrolling down to the photo of the incredibly muscular man cuddling his pillow with his giant melon-packed arms, it's hilarious.

**In fairness, apparently it's not usually as bad as that, I just have a particularly objectionable nose. If you're squeamish, don't continue reading: The first time the nurse tried to pull the packing out, I asked "How badly will it hurt?" and the nurse replied "A bit." I am fairly good at dealing with pain usually, so I braced myself. She gave the packing a firm nug and it felt like my nose had exploded. I shrieked and she gave me a slightly unsympathetic look and told me I had to "get it over with". On the second attempt, she got the packing out, along with really quite a surprising gush of blood that went all over the floor. It hurt so much I was physically shaking and the nurse was forced to admit that it wasn't usually quite so horrendous.

IMFW: Aluminium Does What Now?

Today's Interesting Medical Fact of the Week is dedicated to my lovely boyfriend. No, he doesn't have a weird and unusual illness, or even just a particularly hilarious deformity - but he does have a deodorant made from Japanese sea minerals.

"What are Japanese sea minerals?" I said.
"I don't know," he said. "But it doesn't have aluminium in."
"Do deodorants normally have aluminium in?" I asked, exposing my ignorance.
"Yes," he said. "It gives you cancer."

At that point, my brain practically exploded and I resolved to investigate whether or not he was just winding me up. And thus, my next Interesting Medical Fact was born.

As it turns out, aluminium is a common ingredient in anti-perspirants rather than simply deodorants. But here's the thing: it can be absorbed through the skin, and it's been suggested that there may be a link between use of such products and the development of breast cancer. The short story is that there's no conclusive evidence for a link between antiperspirant use and breast cancer.

Looking at Wikipedia, though, it's not just cancer you have to be worried about if too much aluminium gets into your system. It's a neurotoxin, high levels of aluminium are present in the brains of many Alzheimer's patients - and one study linked the long-term use of antiperspirants containing aluminium with the accumulation of levels of alumium that may increase the risk of Alzheimer's disease. The good news, however, is that a causal relationship between aluminium and Alzheimer's has not been found.

Finally, the only concrete evidence for these antperspirants adversely affecting your health: renal dysfunction. No, aluminium doesn't cause it, but people with renal dysfunction are advised to consult their doctor before using deodorants which contain aluminium. Damaged kidneys cannot clear aluminium from your body as effectively, and thus patients with kidney failure may be at increased risk of building up potentially dangerous levels of aluminium in their systems.

Of course, the fact that no proof has yet been found doesn't mean that no proof will be found for a link between aluminium anti-perspirants and cancer or Alzheimers. But for the time being, they are officially considered safe.

IMFW: The Burzinski Saga

Less an interesting medical fact today, more an interesting medical story. Are we sitting comfortably?

Then let's begin.

I was reading the Guardian today, as is my wont, and I came across this article about the interesting story of Rhys Morgan, a 17 year-old Welsh blogger. Rhys wrote a blog post about the Burzynski Clinic, a US cancer treatment centre. Keeping it brief, the Burzynski Clinic runs (non-randomised) clinical trials of a therapy for cancer, and it charges very sick people thousands of dollars for the privelege of taking part in these trials.

So far, so US healthcare.

But Morgan and other bloggers have pointed out that although these trials have been going on for decades, the National Cancer Institute website notes that no randomised controlled trials of Burzynski's treatment have been published, nor have other investigators been able to duplicate the results found by Dr Burzynski and his colleagues in earlier trials. The treatment is not approved by the FDA for the treatment or prevention of any disease, but people from the UK are raising hundreds of thousands of pounds to travel to the US to try this treatment, and these bloggers questioned that.

Unsurprisingly, the Burzynski Clinic repudiated these claims of unethical behaviour. For their trouble, Morgan and others were ineptly threatened with legal action by the Burzynski Clinic's former PR man (nice work), threats which they responded to in a dignified and thoughtful way. You can read Morgan's very interesting correspondence with the clinic here.