What's in a name?

[TeeDC]

The term "pernicious anaemia" does sound a bit old-fashioned, like it is some older disease that should be eradicated by now, like smallpox.

My husband said something funny recently - or at least I hope you all think it is funny, too. I had told him I joined PAS and he knows I go on the forum all the time. He called us the "Pernicious Anaemians." I thought that was hilarious! I am proud to be a Pernicious Anaemian!

T.

[Vix]

I love it!!!!
Vx

[BeeNumber12]

[Maudy]

I think it should be changed (despite the term PA being apt) because it causes so much confusion amongst both GPs and outsiders.

You start talking about PA but then have to tell people you haven't tested postive for it...
Then you have to explain about classic PA ...yadda, yadda and by this time people think you are a hypochondriac trying to convince them you've got something you haven't tested postive for...

GPs are the same. If you test positive then whooodeedoo you have PA. If you test negative they give a little smirk, a small shake of the head, and tell you you 'but you haven't got pernicious anaemia. (you little twerp)'

Too much confusion. Keep it simple.

How about;
The Forgotten Killer

[Maudy]

I absolutely agree. I did think about posting that but then thought we would never get the medical establishment to agree - after all, it would mean changing their rulebook. Scary stuff!

[anotherwithpa]

But there are those that realy do have the classical PA..for them the name is fine, I think it should just have an added and B12 def, Pernicious Anaemia and B12 def Society would seem right..not sure about pabs though..pas is better

[Maudy]

I actually like the name PAS, it's just that a lot of us don't have PA.
I'm a member of a society for something I haven't got Which GPs, friends, family and anybody else are only too willing to point out.
"Ahh, but it's the Pernicious Anaemia Society and you haven't got that, therefore there is nothing wrong with you other than a bit of a vitamin deficiency and you can buy that stuff from the health food shops..."

I mean, the whole thing is a mess. Not the PAS name, just the diagnosis, treatment, definition...everything.

You start explaining to somebody about PA. Then you tell them you haven't got it (but miss out the bit that says a future test might prove you do actually have it) Then you explain about the blood tests and they ask about the normal range. Then you have to explain that although the ranges can appear normal in fact many are not because our ranges are too low. Then you have to explain about when ranges are normal but people are still sick because there are inactive and active forms of b12. If they eventually get that you then have to explain that although the active b12 might be available to the body it can't be used because something is stopping it. What? they ask. Hmm. In many cases we don't know, and, even in cases where we do know like mine (hyperchlorhydria) doctors have never even heard of it.

You can see them looking at you like you're the world's biggest numbskull thinking: Don't be stupid. Modern medicine can't be THAT wrong.

If we could at least start with a name that clearly defines the problem, like Andrea's suggestion of Classical PA, then Types 1, 2 etc, we'd at least have a fighting chance.
I mean, if somebody tells you they are diabetic you get it immediately. They don't have to launch into an interpretation as per above. You know they have a clearly defined medical problem.

[BeeNumber12]

[gillian0468]

The reason I think the name should be changed is because when you here "anemia" you automatically thinks its a problem with the blood, which it isn't. Most of the doctors I've come across think so too and that's where the problem begins I think.