Overhead a woman talking about arthritis

[Kittykatxxxxx]

I had an appointment today at the rheumatologist and I heard a woman saying 'I just wish there was more publicity for arthritis there seems to be lots for other stuff like cancer but not arthritis. I agree with this. I wish people would realise arthritis is not just an old persons disease and that just as you are getting older you shouldn't have aches and pains. Maybe if people were more clued up they could get treatment earlier and have a better outcome.

[Hidden]

Totally agree. The big arthritis charities are so concerned about keeping everyone on board that they have to cater for those who just have a bit of OA in their thumbs and this is mainly older people. But even older people with arthritis should be met with more compassion by society it seems to me. And I'm getting increasingly of the opinion that we need to cut out the word arthritis from the inflammatory conditions involving arthritis and focus on the word AUTOIMMUNE. But then I look at Lupus and Crohns and AS and MS and PsA as well as RA and think to myself that there's got to be more to this than just a name change - a major campaign to raise awareness about all these autoimmune diseases rather than all the money and focus going to cancer all the time. Tilda x

[Hidden in reply to Hidden]

Tilda...I totally agree with your comments. I have a question, this is totally non confrontational ...are there figures available to show how much money is spent on each discipline ...cancer and RA? Would be really interesting to see

Kate

[Hidden in reply to Hidden]

I don't know I'm useless at figures. I imagine that RA would fare rather badly in comparison because one in three of four of the population suffers from cancer I think and its aprox one in a hundred with RA. But if you gathered all the autoimmune diseases together under one umbrella then it would probably be quite reasonable comparison re funding. Haven't a clue really but I do feel that RA, PsA and AS may well be coming under the wrong banner (arthritis) and autoimmune should be key to raising awareness and lobbying.

[Hidden in reply to Hidden]

Makes sense although given the two different diseases may be difficult to make a fair comparison. Hopefully research into both will find a cure for the next generation

[allanah in reply to Hidden]

Hiya Katy, I can't produce the figures as I have left work now, but I worked in public health for a while. The stats were unbelievable . The funding put into coronary heart disease then cancer treatments and research was astounding, but then so was the improvement graphs of deaths from these illnesses. We had long debates that the government put money into these " sexy" diseases, and this indeed had an impact and we are all aware that people with cancer and heart conditions a) are surviving longer and b) more treatments and causes are being researched and found every day.

But the " unsexy diseases" COPD, Arthritis etc get much less funding and promotion from government sources. You just have to talk to the British Ling Foundation or an amazing professor Graham Burns in Newcastle to hear of their frustration at the differences in finance for various diseases.

He now chairs the NICE investigations into COPD and cares passionately that people with these awful chronic illnesses should be heard and not left in pain and suffering.

I heard another very interesting viewpoint that was that alot of our prime ministers had suffered coronary heart disease, when you think of it, Blair etc, and which disease did they increase funding too, coronary health!! Well, maybe if one of the PMs got RA we would see a difference!!

Wot u think? axx

[Hidden in reply to allanah]

Laughing....now that is entirely possible. Wonder if we can put a hex on a PM.....preferably one we did not like...and watch what happens.

I am aware of how money was divided, like you working in the NHS we saw first hand which specialities got the biggest budget.

Hope you are well xxxx

[Riedenise in reply to Hidden]

Tilda I agree with You, Ive lost count of the people who have aches & pains too. 'Arthris' needs to be dropped & Auto immune or Disease added instead.

[Hidden in reply to Riedenise]

In America they are calling it RAD - Rheumatoid Autoimmune Disease. Personally the jury is out - we can call it whatever suits us but I think that the autoimmune diseases all need to rally round to support each other and lobby together to raise awareness. Xx

[Hidden in reply to Hidden]

Hi Tilda, I put Autoimmune Diseases in the search engine and the list was endless! If they were to put these all together along with the money I would assume that it would be more than for Cancer and Heart. Yet because of the amount of different diseases under this umbrella I think each department would have a terrible fight on their hands to get funding for new research as they would all be braying for it, more so than now one would imagine. So not sure what the answer is. xx

[Hidden in reply to Hidden]

I guess you're right Georje. I'm just super aware of the overlap of all these autoimmune diseases at the moment but I believe NRAS usually punches well above its weight and is an example of how much more focused a small charity can be. I know this from having grown up with two deaf sisters and having had parents who fought tooth and nail for the rights of disabled people as campaigners. I have close family connections still with both small and big charities and see how the bigger ones often lose their focus and often fail those whom their founders were trying to help the most. The hard of hearing versus the deaf - ring any bells in this context?! X

[francherry]

Hi everyone, I found this from last June's Evening Standard: standard.co.uk/news/health/...

It says:

"Rheumatoid arthritis affects about 1% of the population, is more prevalent among women and strikes most often in people of working age. It costs the NHS £560 million annually, with additional costs to the economy due to sickness absence from work and aspects of work-related disability estimated at £1.6 billion."

I agree, Kitty, lots of people don't really understand what having RA means in real terms. I'm on a bit of a mission to change that when I speak to friends, people in shops etc if I happen to mention I have RA and they start asking questions. Almost feel I should take little print-outs around with me to raise awareness & explain 10 key facts about RA!!!

[Ailsa-NRAS Partner NRAS in reply to francherry]

Hi Kitty

We do have a 10 key facts sheet if you want to ring the helpline and ask for it. It's a double sided A4 sheet so easy to give to someone.

BW

Ailsa

[allanah in reply to Ailsa-NRAS]

Hi Ailsa! Well one thing is for sure we know you are all out there passionately shouting about RA on our behalf xx

[francherry in reply to Ailsa-NRAS]

Hi Ailsa,

I'm not sure if you meant to reply to me (as I got an email saying you replied to me) or to Kitty, but thank you for this. Agree with Allanah, NRAS do a great job and so do the other arthritis charities. It's the media and wider society that I was referring to (and I used to do PR for a health charity so I know what it's like getting the message out there). I thought the infographics for the recent awareness week were great and shared them on my blog.

Thanks again,

Francherry

[earthwitch]

even just calling it "inflammatory arthritis" makes it sound a bit more serious than common or garden "arthritis".

[Hidden]

All this is relevant to me. I have recently mentioned on here that I have a very rare type of arthritis called synovialosteochondromatosis (sorry if i go on about it!).The surgeon says I was born with it and no one knows anything else about it-incuding various arthritis help groups.Little is said about it on the internet. I began to develop it in my forties and it has led to many arthroscopies, a knee replacement and I'm awaiting a second.Personally I think it must be autoimmune or at least caused by undiagnosed hashimotos all my life and probably the gene anomoly of enzyme D102. I think I need to give my body to research!

One thing I have noticed is that when walking with a crutch, people are kind and understanding and willingly give up seats and realise i am in pain. What they don't see is the slow, up and down recovery that I've been through due to hashimotos, which is worse in a way because of the depression and mental problems it has caused. Very little understanding is shown towards that, because people can't see it.

[Hidden in reply to Hidden]

I thought i was on the Thyroid forum which i belong to!! I've mentioned my arthritis on there.

[Hidden in reply to Hidden]

I really think it's a good point JanJan. I have RA and Hashimotos and knew nothing about the latter disease until very recently but have learned quite a bit about RA, despite only having it for 21/2 years.

Last time someone posted a question on here asking about RA and Hashimoto's, about a year ago, lots and lots of RA people said they also suffered from Hypothyroidism too and I know there are people on here with PsA, AS, Lupus and several other related conditions.

This is why I think it's particularly important to flag up autoimmunity in relation to cancer and research, funding and most of all awareness. Whenever I explain RA to people who don't know anything about it they suddenly grasp what I'm talking about when I mention autoimmunity.

I know someone who has Crohn's and who is currently undergoing surgery to remove her bowel and is in a terrible way just now. She had never heard of DMARDs and knew nothing about RA until we spoke about it all. I feel I have more in common with her than I do with people with Osteoarthritis because for me RA has been more about systemic issues than mechanical. She can talk about being constantly on high dose steroids and the Spoon Theory and fatigue and the relentless worry where my friends with OA tend to just want to compare their hands and knees with mine and tell me there's nothing wrong with mine compared to theirs! X

[Hidden in reply to Hidden]

They've had a new scientific finding in the thyroid world. Have a look on the Thyroid UK homepage. It's about people not being able to convert T4 to T3 when they are given thyroxine.I need to take armour thyroid with T3 in it in order to feel well and my Dad was the same. There is a gene anomoly that causes this and I discovered that it also causes arthritis.Is your hashimotos well under control with thyroxine?

Also i have noticed on the orthopaedic ward that a lot of arthritis ladies also have hashis. It could just be that if you have one autoimmune disease you have others as well.

My mother-in-law has Crohns and it's awful so i feel for your friend. Jan x

[Rowan in reply to Hidden]

I wonder how many of us out there have more than 1 auto-immune disease. I too have hashimotos and RA with a little Vitiligo thrown in. Surely the possibility of multiple problems and therefore multiple costs to the NHS should attract more attention than it does.

[Hidden in reply to Rowan]

Yes, they definitely need to do a lot more research!

[cathie in reply to Hidden]

So sorry to hear of your very long named disease. Sounds like Welsh to me! Seriously - how have you found the knee replacement? do you have any views about the advisability of it or would you avoid at all costs?

[trianon]

I wholeheartedly agree with everything that's been said here. Even though there was Rheumatoid Arthritis Awareness Week a while back there still isn't that much 'awareness'. Many people still think its an old persons disease (could this in part be due to not knowing the difference between osteo and rheumatoid?). I've had severe Rheumatoid Arthritis since I was two years old (I'm now 57!) - I've been asked on numerous occasions if its Thalidomide!! And, while I'm on my soapbox (!), RA seems to be treated like a 'poor relation' at the hospital. My Rheumatology department is in a little corner, no automatic doors (as in the rest of the hospital), tiny waiting room with hardly any room for wheelchairs, reception too high for wheelchair patients, at least now we can have blood tests done there - but woe betide if you need x-rays (which I quite often do) - its go outside, up the road and a bloody big slope to either A&E or Fracture Clinic. Its been like this for years! Don't even get me started on my GP's - they know bugger all!

[trianon]

Sorry, amid the rannting I do want to add that my Rheumatologist is great - and my surgeons (all 3 of them) are fantastic!

[Hidden]

I suggested to Andrew at NRAS (via Twitter) if we shouldn't campaign one of the big three 'soaps' in the UK. If a main, much loved character developed ( and kept, not got miraculously cured overnight) RA that would do an amazing amount to raise public awareness in my opinion.

[francherry in reply to Hidden]

I agree, definitely. Coronation Street has Cherylee Houston (I don't watch it) but know about it because she has Ehlers-Danlos Syndrome type 3 (as I do). So why not have someone with RA in Eastenders?!

[Hidden]

Well there was young Daniel Hebden in The Archers some years ago, who developed JRA at a very young age and this story taught me something about arthritis affecting children and young people. But the story line has fizzled out now. They could always have him being affected once more as a law student though?

[francherry in reply to Hidden]

Great idea!

[miss]

I think you could be onto some think there Lilac-Lion!!! Can say i do agree with above commits hear hear

[allanah]

Loving this thread, I have diabetes, asthma, poly cystic ovarian disease and osteoarthritis and RA, plenty of auto immunity going on there I think!! Save me looking up I don't know what hashimotos is?

Great idea about trying to get a character with RA, as long as they get Ailsa NRAS to guide them in what it's REALLY like!! axx

[Rowan in reply to allanah]

Hashimotos is autoimmune thyroid disease which causes distruction of thyroid. This organ produces hormones which regulate all cells metabolism. Thyroid hormones are essential for life!

[allanah in reply to Rowan]

That sounds horrid! Wots the treatment? Take out the thyroid, replace with hormones? Poor things xx

[Hidden in reply to allanah]

No its a bit like diabetes - synthetic thyroxine is used to replace what the body isn't making naturally as with insulin. Its a relatively common condition but very under recognised - just like RA in that respect. If you are untreated for hypothyroidism you can get stiffness and pain in joints as well as muscles, extreme fatigue, trouble with weightloss. It can even be fatal if you cant produce thyroxin and you aren't getting enough thyroxin naturally.

The thyroid is a tiny organ but its fundamental to life. Fortunately its much easier to diagnose and treat hypothyroidism than RA. Graves disease is the other extreme - an overactive thyroid and people with it have bulging eyes and underweight I think.

Hashimoto's is very common in Japan and is the autoimmune version but I don't know how this differs from the non autoimmune one exactly?

Thyroid UK HU is a very busy place and I usually feel overwhelmed when I visit it - so many people and ideas I can't keep track! X

[Ronnie63 in reply to allanah]

I also have poly cystic ovaries and hypothyroidism, the second of which is an auto-immune disease.

One of my brothers has vitiligo as well as alopecea arreta ( 2 more form the auto immune family so guess I've just got defective genes

[allanah in reply to Ronnie63]

Oh right my doc told me PCOS was too? Maybe not. Thyroid seems to be looking like a big culprit. They keep testing me for it but nothing ever comes back, thankfully xx

[Ronnie63 in reply to allanah]

There is a list somewhere of the 63 diseases, that's how I know PCOS isn't one of them. Bizarrely I also had malignant melanoma 4 years ago (in a place where the sun doesn't shine!!), the gynae oncologist told me it was an auto-immune malfunction induced cancer in my case. My theory is that I have hypothyroidism because I was born 6 weeks prematurely so the gland didn't have time to mature in the warmth of the word (happens in the last 4 weeks apparently) and I wasn't incubated to recreate the heat and womb conditions. I wonder if the immune system is similar and wonder if lots of use were premature and if there's a connection. Just a theory I've been musing on............

[Rowan in reply to Ronnie63]

Never heard that theory but I was also premature by 4 weeks tho. Interesting possibility!

[allanah in reply to Rowan]

I was 8 weeks premature!

[Ronnie63 in reply to allanah]

Wow, we might just be into something, I'll create a post x

[Hidden in reply to Ronnie63]

Just to add the other side to this theory....I was not prem, neither was my daughter, we both have RA and most definitely no issues with our thyroid. My son was seven weeks prem and is as fit and healthy as anyone can be with no thyroid issues. Might be worth taking this question to the thyroid page of HU alhough I am certain there will be a few of you already ahead of my thoughts on that. Good luck with your research

Kate

[allanah in reply to Hidden]

Lol Katy , we all know its not research ! Lol, just messing about with coincidences x

[Hidden in reply to allanah]

Yes It needs to be a main character, not elderly and yes advice from Ailsa or someone similar to make sure they get it right. And it needs to be ongoing with all the trials and tribulations that involves.

[Hidden]

I agree with Allanah this is a great thread! It seems to me that there needs to be far more research and awareness for into autoimmunity in general given that there are so many overlaps?

I mean there are many very different types of cancer requiring extremely different treatments - but one leading cancer research organisation in the UK. And where I live there are four registered cancer charities for a population of 20,000. This can't be proportionate to the overall population in comparison to autoimmune conditions here surely? I think this probably applies to the UK in general.

A woman I met recently has had RA for over 20 years and has a stairlift and a permanent neck brace. Her husband has cancer now and she was astounded by how much support he's been offered compared to her. He is astounded too! - having been her main carer for many years and having had to look after their kids on his own for long periods in the early days when bed rest down in Aberdeen was one of the main RA treatments.

[Hidden in reply to Hidden]

I can relate to this. My best friend who I also worked with, got cancer in August last year, two months before I went off sick with RA. We have both been off work since then but whenever I have to go in to see the boss there's a real feeling of "Yes you've got aches and pains but she's got cancer!" Thankfully she is in remission now and she and I have been a great support to one another. But the support available here (IOM) for cancer patients is amazing but for anyone with autoimmune diseases. Nothing, zilch, zero.

Incidentally I have been tested many times for PCOS as I displayed all the symptons for many years but the tests always came back negative. (Bit like my blooming RA factor does now )

[Hidden in reply to Hidden]

Poor you JoJo you have my sympathy. Its hard to envy anyone cancer of course but it is so depressing to have a disease that so few understand or recognise - especially for you with your IOM problems and work issues.

[norfolkjo in reply to Hidden]

I have a friend with cancer who I am close to and we support each other. I havenot had the support from work shehas had andsshe said yesterday when her chemo is over she is illness free and back l to normal where I wont be .. still rather be me than her but it is a point to consider

[Hidden in reply to Hidden]

I can vouch for that Tilda, I have had RA for 27 years and Sjogren's Syndrome for 20, but hardly had any support offered (except medical staff). Yet when I had Breast Cancer last year, I had support being thrown at me from every direction!! People's reactions are different too. Tell them you have any type of arthritis and you just get a blank stare or a very disinterested response. Tell them you have cancer and they are all over you, asking questions and becoming very interested.