Angry? Sad? Frustrated? I don't really know. I have a rare disease, one of these things that happen to very few people. Apparently, the majority of sufferers of my disease are female and middle-aged, not as attractive as young children. Some of us will die early after diagnosis, most often of kidney failure, but basically, any organ can pack it in, any time. For most of us, drugs help us to keep up a semblance of our former active and healthy lives, but there is always the rumbling of the volcano in the distance. We don't look ill. We look lazy.
As with all rare diseases, research is limited. And not necessarily because of funding. The pharmaceutical industry is already making a fortune from the drugs to suppress the immune system and from the drugs to treat the side effects of the immune suppressing ones. Why find a cure?
Sarcastic, I know.
But to be realistic - and I have read my stuff, plus I do know a thing or two about medicine - the idea of a cure is so far fetched, nobody in their right mind would set out to look for it just like that. It's complicated and maybe one day in the distant future, someone will find a link, the secret code to open the door to the immune system.
Of course I want this to happen. In my perfect world, I want scientists to research day and night on cures and treatments, regardless of whether the disease is rare or affecting millions around the world.
But I also want improvement for today's sufferers because whatever researchers may come up with, it's too late for them. I want a share from every ice-bucket-generated money to finance better wheelchairs, better accessibility, computers, touchpads, phones, speech support, cars, the whole technical show of wonders, whatever. And while we are at it, annual holidays for ALS patients, families and carers, and never again any hassle with insurance costs or permits.
But most of all, I want this to be self evident.
Only when the last ice bucket has been emptied over the head of another shrieking celebrity will we realise that ALS and hundreds of other rare diseases are still fatal. Or maybe not even then.
Very poignant post. I hope your toothache is better? I've been away and now I'm all caught up.ReplyDelete
I just keep thinking that the ice bucket challenge has become a social media event rather than something which will raise awareness about ALS. Which is sad.ReplyDelete
Medical funding should not have to come from gimmicks and runs and walks and pink t-shirts. That's how I feel about it.
"As with all rare diseases, research is limited. And not necessarily because of funding. The pharmaceutical industry is already making a fortune from the drugs to suppress the immune system and from the drugs to treat the side effects of the immune suppressing ones. Why find a cure?"ReplyDelete
As a medical transcriptionist who also knows a thing or two about medicine, I share your angry, sad and frustrated perspective. An artist friend of mine who has chronic migraine headaches wrote similarly:
I thought of her post when you wrote, "We don't look ill. We look lazy."
Thank you for your clear voice that comes from your lived experience.
Ah, the rain and my beloved ravine. Also my "medicine" for times of pain and anger. Oh Sabine, how I wish that the world were perfect and that what you want to happen would indeed happen.ReplyDelete