A Moment for Meso

I first heard about Mesothelioma when I was a child- my parents were talking about someone who had died of a cancer caused by asbestos, and how unfair it was. They explained to us that a long time ago it had been used as a building material, but that they had discovered that even a little exposure to the dust could be deadly so they had stopped using it. That was all I ever knew about it, so I was shocked when I learned recently that although they have known it was dangerous since the 1950s, it wasn’t actually banned until 1999 and it’s still the leading cause of work-related deaths in the UK

Mesothelioma is a cancer of the cells which cover organs, usually those of the lungs. It develops slowly and is often not discovered until the sufferer is already struggling to breathe. Although it can be up to 40 years from exposure time to the patient developing the disease, once diagnosed the average life expectancy is a mere 1 year. It’s incredibly painful and debilitating, but the early signs tend to be subtle and so often missed – weight loss, side pain, shortness of breath, fatigue and a persistent cough.

One of the great battles faced by Mesothelioma sufferers, much like those of ME, is the lack of information available for patients and doctors. Although most people are aware that asbestos is dangerous, very few realise that it was still used as a building material in the UK as late as the 90s. Then there’s the large number of professions exposed to it – from those serving in the armed forces to those washing construction crews’ clothing – most of whom never knew there was any danger at all.

The good news is that there are treatments available, and new research is being carried out all the time – the prognosis nowdays is better than it was even 10 years ago! However, many doctors are still unaware of the latest options, and patients often struggle with understanding the illness and what to do about it. That’s why, as ever, the spread of information is key – and that’s something we can all help with.

We can combat poor poor life expectancy simply by knowing what to look for. Usually the illness is diagnosed very late, but the earlier its caught, the better the chances of survival. You can find out more about the symptoms at www.mesothelioma.com/mesothelioma/symptoms. It’s also a good idea to check whether you or a loved one worked in one of the industries which used asbestos – a list can be found here:/www.mesothelioma.com/asbestos-exposure/occupations.

If you’ve been diagnosed then there’s a wealth of medical and legal help available at websites like www.mesothelioma.com (US) and www.mesothelioma.uk.com (UK) where you can find out about the latest treatment and research options. There are also support groups and helplines available. In the UK you can sign up for clinical trials through the NHS at www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx and help researchers improve treatments and quality of life for sufferers everywhere.

Lastly, if you’re thinking of carrying out some DIY or home renovations then find out first whether your home was constructed with asbestos, so you don’t accidentally put yourself and your family at risk.

Like ME, this was a disease I had vaguely heard of but never really knew about, but it’s something many people know all too intimately, and those sufferers need support too. I’m glad I took the time to learn a little more and to share that knowledge. Information empowers us – the more we know, the better we fight!

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Migraine awareness week!

It’s migraine awareness week, and as a sufferer of migraines on an almost-daily basis, I should probably write something about it. Except, ironically, I’m way too ill to write much at the moment, and right now I have a migraine. (Before you butt in with “oh, if you really had a migraine you wouldn’t be on your laptop”, I live in severe pain every minute of every day, and eventually you have to just do things despite it, or you die. So yeah, it’s a milder-than-it-could-be migraine, and using my laptop on a low light setting will make it much worse than it currently is, but that’s my life.)

So, migraines suck.

Apparently 1 in 7 people get them, and they are really disabling. They stop you being able to work or think or do much at all really, except lie in the dark and quiet, and occasionally make them worse by using your laptop on a low-light setting to talk about them. Also, they are way more than a headache, it’s all stuff nobody understands but it’s to do with blood flow to the brain. They can involve lovely things like visual and audio disturbances, and puking; probably other stuff too. They can also occur without headaches at all, which makes them tricky to spot. They can exhaust the body so much that some sufferers end up… well, as ill as me. Even if you don’t end up that ill long-term from them, while they’re happening they’re pretty awful.

Obviously, migraines are an invisible illness, and sufferers generally don’t look like they suffer from anything at all, except when they are throwing things at you because you’re playing loud music and it’s making them feel like their skull is actually cracking in half. If someone really has a migraine, don’t dismiss it as “just a headache” (and similarly, if you have just a headache, don’t go round calling it a migraine) – they can be seriously debilitating things, and if you’re lucky enough to never have had one, be thankful, not skeptical!

I apologise for the lack of eloquence. Pretty wiped right now. Here are some slightly more coherent links about migraines:
http://www.migrainetrust.org/migraine-awareness-week
http://www.migraine.org.uk/index.php?sectionid=40