Some Thoughts Over the Weekend on Rarer Diseases…..

I found myself yesterday and today feeling frustrated and maybe a little upset by something I read on the internet yesterday afternoon as I was facebooking. I’m 100% sure the comment wasn’t meant to be taken in the wrong way, and indeed I didn’t feel any ill will or even offence, just the frustration of knowing that there is so much work needed to raise awareness for rarer conditions (be they cancer or otherwise).

I have a friend who’s got a debilitating disease called Lupus (Systemic Lupus Erythematosus – SLE), nasty little blighter it has to be said. The symptoms mean you are unable to tolerate any form of light be it natural or artificial, any exposure causes severe blistering of the skin, it can also impact your joints, kidneys, and other organs. I don’t know that much about it other than how it impacts my friend on a day to day basis, and that person shows enormous strength against much adversity. If you want to know more then you can check out this Medscape article, it’s a bit detailed, but then again I’m used to looking at the medical mumbo jumbo. I can only imagine the physical pain this must cause let alone the mental anguish of feeling trapped by one of the most natural (and supposedly life giving) things in the world….light. For those of you wondering, no, this isn’t just a nasty touch of sunburn.

Anyway, it got me thinking. I can only relate my experiences directly to Kidney Cancer but if you’d asked me 3 years ago if I knew what Kidney Cancer was and what treatments were available, how prevalent it is, how many people live, how many people die… well, I wouldn’t have had a clue. In fact I would have more than likely said “Didn’t know you could get Cancer of the Kidney, and anyway aren’t all cancers the same?” If I’m really honest I used to bury my head in the sand when it came to any type of disease, but especially the dreaded “C” word. I assumed, like I suspect many others, that all cancers are treatable now if you catch them soon enough, you just zap it with a bit of radiation and a bit of chemo, and Bob’s your Uncle… as long as you get past 5 years you’re cured!! (or at least in remission).

Well for Kidney Cancer that couldn’t be further from the truth. Kidney Cancer is an aggressive little bugger that doesn’t respond to radiotherapy, nor does it respond to chemotherapy. Kidney’s by the very nature of what they do are tough little so and so’s and can resist these treatments. Like all cancers, cutting it out seems to be the best starting point, and if you’re lucky enough (like me I hope) that should be it. Generally in Cancer treatments they try and hack out the offending items and then they follow up with Chemotherapy to ensure it’s all flushed out. You can’t do the Chemotherapy bit with Kidney Cancer, so if you’re unlucky and it’s already spread then your next course of action is either more surgery and/or drugs that will help maintain and stabilise any future growth. When Kidney Cancer spreads it doesn’t morph into a new type just because it’s now in your lymphs, brain, or lungs, or bones etc, nope, it stays as Kidney Cancer. Even for me I’ll never get that 5 year remission thing, we’ve just got to live with it and hope we stay NED (No Evidence of Disease).

These Kidney Cancer drugs I talk about are some of what we are fighting for in the UK, fighting to make them freely available on the NHS for everyone. In the scheme of things drugs such as Sutent, Nexavar, Torisel, Avastin and now Affinitor are still new on the market, and have added enormously to the weapons Oncologists have in their armoury. And just in case you think “that’s all well and dandy then you’ve got treatments”, well, they don’t all have the same impact on people, some work for some people and not for others. What’s infuriating is that our Oncologists know these drugs can work and yet N.I.C.E. refuse to approve them all which would enable our medics to mix and match these drugs for patients. These are the drugs that give Kidney Cancer patients a quality of life that everyone deserves, without them there is no quality.

Drugs aside, what this weekend has highlighted to me is the need to continue to raise awareness as well. If nothing else I hope we can raise enough awareness to make people realise that not all Cancers are the same, they display different behaviours, some are more aggressive than others, treatments are different, symptoms are different, the research required is different, mortality is different etc etc, but more than anything else they have different perceptions in the public’s eye. Ask someone about Lung cancer, Leukaemia or Breast Cancer and they’ll tell you’ve they’ve heard of it, they’ve probably even given money for it, they’ve sadly probably known (or know) people who suffered from it. Like Lupus (by the sounds of it) what needs to happen is a heightened awareness, why? Well because more money and research is available for the better known diseases, more money is given by the PCTs and N.I.C.E for the better known diseases. A sense of balance is needed, and I suppose this is the greater fight.

Why the comparison with Lupus? I’m not for one minute suggesting there are any similarities in terms of the disease, but I’m willing to bet that they have a similar need when it comes to raising awareness and availability of drugs. Lets face it if people hadn’t stood up and rattled their sabres and tins for Breast Cancer, Lung Cancer, Leukaemia and the like then there would be no treatments, no awareness, no research. Each cancer strain and disease requires different types of research …. they are not the same.

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Posted under Andy Thomas, General

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