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Anemia Forums › General & Support › Info for rare anemias
01/08/2011 10:17 AM
Waytoohandsome
Posts: 474
Member
Whilst I was searching for some stuff on the Interwebs, I came across this site set up by a European medical group covering several countries. It's for a sort of center for information on less common and rare types of anemia. There's a public/patient part of the site and a section for doctors to get more details.

If you or someone you care about does not have a common form of anemia, this might be helpful.

Link to main page is:

http://www.enerca.org/

"Worst of all, young man, you've got INDUSTRIAL DISEASE!!" - Dr. Knopfler
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01/08/2011 10:44 AM  Top
TaraT
TaraT
 
Posts: 4164
VIP Member
You know the problem with our western hematological problems is they DON'T LOOK for anything that is "RARE"...

We are all labeled as having pernicious anemia if they can't figure out WHY we are anemic...and I truly feel like this is what has happened to me. I don't buy it for a second that my problem is solely because I am not absorbing enough..

What about when I was younger and very healthy and would get anemic and almost pass out as a teenager...There was NO reason for me to be anemic then... etc..

I hope that we find more info. with this site you have posted and that the information they are gathering helps many people.

With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.

Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace."

01/08/2011 03:51 PM  Top
Waytoohandsome
Posts: 474
Member
Tara,

I know what you mean about labeling something 'rare'. It's like a code word for "Ahh, don't bother, just forget about it."

I can easily see that calling something rare means you make it even rarer. Why? Because doctors stop testing for it and then....lo and behold, NO ONE EVER GETS DIAGNOSED WITH IT! It's almost like you cured the disease!

(Except for the minorly annoying fact of the few patients still saying they feel lousy...)

"Worst of all, young man, you've got INDUSTRIAL DISEASE!!" - Dr. Knopfler

01/08/2011 05:48 PM  Top
TaraT
TaraT
 
Posts: 4164
VIP Member
Yea before they started recognizing HIV and AIDS they labeled those people paranoid or delusional or both.

It's real alright...and so is lyme disease and a lot of OTHER things that they try to sweep under the rug..

Why do they always deny and label people as crazy when they don't want to WORK for their money?

With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.

Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace."

01/09/2011 06:22 PM  Top
winnielove
winnielove
 
Posts: 27
Member
This made me think about my own experience, not that I have a rare form of anemia (pernicious) but the fact that to most people when you say i am anemic they tell me i should just eat more spinach. Then I have to explain what PA is and why it doesn't work if i just eat more meat. It frustrates me.

01/09/2011 07:36 PM  Top
TaraT
TaraT
 
Posts: 4164
VIP Member
I completely understand where you are coming from winnielove. Unfortunately for those of us who have been labeled with P.A. there is nothing more they are willing to do.

Eat plenty of iron rich foods and take your supplements and get your iron shots etc...That's about all the help even a hematologist will give...UNLESS they are REALLY really good docs...

THey are hard to find but I have to believe they ARE out there somewhere...

With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.

Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace."

01/14/2011 12:53 PM  Top
Cbelle
Cbelle
 
Posts: 449
Group Leader
God bring us better doctors, researchers, VOICES TO SHARE! This forum could one day really help the field. It's great anecdotal evidence from many honest reporters.
I am not a medical professional.

"By knowing our darkness we fully receive and draw upon His strength. By nature, we so often want to be able to stand in our own resolution and commitments to the Lord. Yet God is committed to revealing the weakness of our flesh to us. He wants us to have a leaning heart at the end of the journey. He desires that we would not find our confidence in our commitment to Him but in His commitment to us."

Dark Yet Lovely
Dana Candler, 5/16/2007

01/15/2011 07:44 AM  Top
Waytoohandsome
Posts: 474
Member
Cbelle,

I agree completely. Kinda shocking in this googlish day and age that doctors seem to avoid forums for conditions they treat.

Wouldn't you think it would be somewhat natural for them to hang out here???

I'm baffled by it, really. Dizzy

"Worst of all, young man, you've got INDUSTRIAL DISEASE!!" - Dr. Knopfler

01/15/2011 09:36 AM  Top
TaraT
TaraT
 
Posts: 4164
VIP Member
I actually have witnessed several doctors visiting the lyme forum throughout the two years that I've been on MDJ.

They may read them without joining or commenting..By the way this is a public forum and everything you type here can be read by anybody.

This is one reason we wouldn't use last names and too personal info. here...private messaging is fine for that...But if you are applying for anything like disability people are probably trying to find your info. everywhere to investigate etc...

Not to be paranoid or anything but thought I'd throw that in just fyi.

With Him we "live" no matter the circumstances. At His feet peace of mind can be found. Peace that passes all understanding is my quest now and forever.

Numbers 6:24-26
"The LORD bless you and keep you;the LORD make his face shine upon you and be gracious to you; the LORD turn his face toward you and give you peace."
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Health Topics: rare anaemia, rare anemia
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