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!

Awareness brings change

This week I’m exploring the needs for awareness, as an encouragement to all those I know who are fighting hard to keep raising awareness. I wrote about how different it looks from the outside, and that lead to the first reason it’s so important to raise awareness – because if we don’t tell people, they don’t know. Today is my second reason:

Reason 2: Because awareness brings change

As I discussed yesterday, when people don’t understand an illness, they make wrong assumptions – and the knowledge and assumptions we have are the basis for our actions.

Currently the assumptions that people have about ME, mostly formed from the negative portrayals in the media and their own preference for assuming the best, lead to a negative treatment and response of those suffering. They hear or assume fakery, false illness beliefs and over-emphasising, so they act as though sufferers aren’t really ill, aren’t as bad as they say they are, or that they would improve if they just thought positively.

It’s even worse when these lies and false assumptions affect the medical profession. Since they aren’t taught about the disease, they have no idea how to treat it – worse, with no accurate foundation, they are susceptible to listening to the serious miscarriages of science in the psychosomatic school of ME ‘research’. Someone with even a basic knowledge could not take such things seriously, but because they haven’t even that much, patients are treated like malingerers. Worse, many are imprisoned in psychiatric institutions, forced to exercise against their will and better judgement, ultimately making them irreperably worse.

But think of the opposite – what happens when doctors are adequately informed of how to treat the disease? Patients improve, they can manage their lifestyles. Or think about other illnesses which have previously been little-known: when enough people know about the difficulties, the much-needed research finally gets funded and there are breakthroughs in treatment. Even in the day-to-day, the way a patient is treated by someone with understanding restores dignity to a horrific situation, instead of degrading them further and adding insult to the grave injury of underserved and unremmiting disease.

Informing people is part of how we make that change. When the balance tips and people’s preconceptions are based on truth, that knowledge will bring change.