research

Settler

many moons ago my mum used to raise money for research into this disease i think if i recall correctly their was a child in the town we livid in had it,
we regulary did jumble sales and craft fairs, anyway that was at least 45 years ago, and im sure a lot of other people then and now did the same, so what im asking is what progress since then 45 years ago has been made, as far as i can see . none, i suffer daily from this, and all im offered is pain killers, addictive ones at that
im really bemused by this and annoyed

dreamdaisy

Research is on-going but the trouble is our disease lacks (for want of better phrases) drama and glamour. It won't kill unlike cancer or diabetes, it's too common (millions of us have it in one form or another) and, let's face it, it's dull.

If you have OA then yes, all you can have is pain relief (which may not turn out to be addictive) anti-inflammatories and doing regular but gentle exercise. Watching one's diet may help and maybe losing some weight but basically it comes down to mind over matter. I do mind but that doesn't matter. I am thankful that I can no longer remember a pain-free life, my husband has one and I can't for the life of me comprehend that - neither can he grasp my reality. DD

stickywicket

Lots of progress, settler. Forgive me if I go off on one here.

As DD says, arthritis isn't a 'glamorous' disease so it doesn't attract the funding of eg cancer. I know cancer isn't glamorous – I've had it – but people relate to it. They fear it. They perceive it as a killer which which wipes out bright young lives. They perceive arthritis as a disease which old people moan about.

However, much has changed in the 53 years that I've had it.

1. There are far more rheumatologists. I didn't see one until I was at university.

2. Far more is understood about childhood arthritis(es). I was told I had Stills Disease because that was the diagnosis given to anyone who developed RA under 16 years of age.

3. There was little understanding of how to treat it.

I was initially told to take aspirins until I got a buzzing in my ears.
I was then moved onto pred.
The only DMARD was gold injections. They affected my kidneys so I had to stop them.
Years of only NSAIDS messed my stomach up permanently. There was no understanding of stomach protectors being needed and, indeed, no stomach protectors.
My first half-break came with penicillamine. It required more NSAIDS to back it up but it actually did something.
My twin saviours have been meth and hydroxy. DMARDS lovely DMARDS.
There are also now anti-tnfs plus, as Starburst pointed out recently, their cheaper equivalent about to appear.

4. They now know much more about arthritis's many different guises.

5. The genetic tendency is now known for auto-immune ones and suspected for some people's OA. I was told, pre-conception, that my children would have no more than normal chance of contracting it. Not so.

6. The link between smoking and RA has been shown.

So you see we know loads more about it and how to deal with it just not how to prevent it or cure it. Those are the biggies but surely the same can be said for any of the major diseases – MS, MD, Parkinsons, Cystic Fibrosis, even – for all the research – cancer.

My take on it is that we live in an imperfect world. A friend died from MD in her early 50s. Another friend lost her 15 year old daughter to Cystic Fibrosis. Another lost her 50 year old husband to meningitis the day after (Boxing Day) he fell ill. A 30 yr old friend of my son (married with 3 children and extremely healthy) had a major stroke.

There's no cure for life. No-one owes us one. We just each have to determine the dimensions of our own personal captivity and then learn to enjoy the many freedoms we have within it.

Here endeth the very long epistle of SW to the already converted

mamasmurf

My late mum suffered dreadfully with RA and her only medication was night time plaster cast splints and soluble aspirin of which she took 16 per day . No other meds and no stomach protector . Big changes between her treatments and mine and I'm hopeful that as my daughter's version of this ghastly illness progresses that her treatments will be better still .
mamasmurf

As5567

I would say even in the last 15 year or so I myself have seen a huge difference in the type of drugs that are coming out. Before TNF drugs were available nothing worked for me.

Arthritis Research UK have played a big roll in developing/finding new drugs for Arthritis, I cant think of which off the top of my head but I know a few regularly used drugs have come from their research. So charity does work, its just like other charities like cancer research....a lot of money goes into their research but we simply don't have all the answers yet.

Settler

just having a rant and feeling sorry for myself , i know there is a lot worse off than me, doesnt stop me feeling the pain and frustration,

phoenixoxo

Hi Shirley,

Sorry I'm a bit late to this

Sorry also that I tend to fly in and out of this forum in a bit of a rush, so I'm not sure which type of arthritis you have. But whatever it is, I just want to say it's natural to feel frustrated about chronic illness, especially when it's causing you a lot of pain. I do a bit of voluntary work for Arthritis Research UK, plus I follow them on Facebook, so I'm aware of the progress they're making, but that doesn't always help me feel better when I'm having one of my flare-ups :?

Hope you've had an okay day

Best wishes,
Phee