Why can't we get better representation??

[katidid]

Gotta vent. I just received and email from Lupus.org. They redesigned their website. I'll leave out my opinions on that for now. What really get me worked up is their new video "Expert Series". First it's not video. It's super crappy audio laid over static screens. Second it's the same medical info that has been around for years, but still doesn't take into consideration the experiences of millions of us. This info is generic, outdated and that makes me mad. If you're going to be one of the biggest foundations representing us, produce content that existing patients can relate to and include what we know to be true. Obvi - the one on skin really ticked me off. Still NO recognition that the malar rash has other causes. The one on exercise made me want to bang my head against the wall. It reminds me constantly that as the patients, we're actually the experts and this static representation and acceptance of what Lupus is in the medical field hasn't and (possibly) won't evolve. We deserve better.

Time to get out the video camera....

#endrant

xoxo to you all

[miccika1]

I seriously can't stand the constant mention of malar rash . Only a third of lupus people will ever havr this while more common issues such as fatigue and malaise gets mentioned rarely and doesn't get any attention as you cant see it as you could see a freaking rash.

[katidid in reply to miccika1]

I have it LOL, but I think the point was more that doctors aren't listening to patients when it comes to trends in the patient community. We're finding associations that they just ignore. You're correct, fatigue, pain, CNS damage ... all of it. The science of the medicine is changing yet the clinical aspect is slow, or unwilling, to adapt. Take stress - ask any autoimmune person who has pain and they will say that stress makes it worse and in many cases can kick off a massive flare. Talk to doctors and they will down play it AND only think of negative stress. For us, stress means different things. Even excitement and geeting overly happy about something can cause people fatigue, pain and, yes, the rash. But will most doctor's acknowledge that. Nope. It's annoying when you see tens of thousands of patients agreeing on symptoms and about the same amount saying their doctor's won't listen. So, not just about the rash but it's a good example.

[farmerfeste in reply to katidid]

The docters seem slow to pick up on things I have been to neuro with a list off symptoms and she will say that's not lupus well send me to that specialist o no you definitely have lupus you can't have that to is often the answer it a rare condition

is there much research into lupus I don't think so nothing has changed much in the twenty years I have been diagnosed .

[PMRpro]

I don't have lupus - but I can tell you from my experiences in rheumatology support it is pretty typical of such sites in the USA (as lupus.org is). The UK groups are way ahead on changes - and loads of US members of our communities say the same.

[Hidden]

I have the same problems with Sjögren’s but the other way around. Information coming from the Sjögren’s Syndrome Foundation in US and John Hopkins is so much more interesting and enlightened than its UK counterparts. I find the UK very behind the times with Sjögren’s compared to the US.

So much depends on the people leading these organisations. My observation is that the patient led charities are probably the most pioneering and relevant. And the ones with doctors at the helm are often less so.

Just a thought though as I don’t have Lupus apparently.