What is an A1 disease?

[watersedge]

Have seen a lot mentioned lately about A1 diseases. Just wondering what they are and what it means. Thanks.

[Rini]

I think maybe u mean A I (i) that is for an autoimmune disease

[Sangye]

Normally the immune system is able to differentiate between itself (ie, your body) and foreign substances (eg bacteria). An AI disease means the immune system can no longer differentiate properly and begins attacking the body's own tissues. The immune system of someone with an AI disease begins making antibodies to certain tissues. The AI diseases differ in which aspect of the immune system is doing the attacking, and in which tissues are being attacked.

With Wegs, it is thought that the B cells (a type of WBC) produce an antibody to the lining of small and medium-sized blood vessels. As they are attacked they become inflamed and weakened.

[Rini]

i have never had it explained so well before...i was just told my body was having a tantrum. conects some dots knowing it was the B-cells. Thanks!

[marta]

Thanks Sangye, that is the most susinct (sp?) and clear explanation of WG I've heard/read.

Rini, how you been? I've been thinking about you. Hope all is well.

As for AI diseases. I'm really thinking hard on how to get the media to grab on to the AI train like they have with Cancer. I think nobody has a clue how many people suffer in silence with various AI diseases. Some are easier to manage than others but they all wreak havoc on the patient's quality of life, and I think it's high time that popular culture knew what this umbrella of diseases is all about. I was thinking of having all the people in our town with AI diseases to come forward and we could have a dance or a party for awareness and have everyone with AI problems come up and hold a sign with the number of AI diseases they are sportin' - I think out of 4500 people (our town's population) I would have a pretty hefty number up there with a sign. That was just one idea.... I'm open to suggestions.

Also I'm still working on the book (going on a holiday to Hawaii for a couple of weeks - in a week) so I'll have some time to put things together there a little bit more. Any of you still in the midst of writing, send'em my way. I've been feeling really good lately and making hay while the sun shines. I've been keeping myself very very busy and have not had many opportunities to sit at the computer. I do think about you guys often, just don't sit to type much. I also had my best blood test results since I got sick - only one flag but everything else ROCKED!!!!! ESR 6, CRP 2.2, no anemia, LFT's all within normal range. I've never been so happy to see my lab results.

Now I feel like I can take on some projects to raise awareness, and stir the pot a little. :w00t:

[delorisdoe]

I read somewhere that breast cancer gets more funding that all other including more common cancers get combined. I wonder why that is? Maybe if we can figure out why then we can aply that to wegners.

[Sangye]

I'm really thinking hard on how to get the media to grab on to the AI train like they have with Cancer. I think nobody has a clue how many people suffer in silence with various AI diseases. Some are easier to manage than others but they all wreak havoc on the patient's quality of life, and I think it's high time that popular culture knew what this umbrella of diseases is all about. I was thinking of having all the people in our town with AI diseases to come forward and we could have a dance or a party for awareness and have everyone with AI problems come up and hold a sign with the number of AI diseases they are sportin' - I think out of 4500 people (our town's population) I would have a pretty hefty number up there with a sign. That was just one idea.... I'm open to suggestions.


That's a great idea, Marta. I think AI diseases don't get the attention that cancer does because they are mostly invisible and hard to describe. Everyone already knows what cancer is, how it behaves and how it's treated. If someone tells you they have cancer, we all ask the same questions: What kind is it, what's the prognosis and how are they going to treat it? If you tell someone you have an AI disease they don't even know where to begin.

In addition to arranging a large gathering, you might consider an online effort where people can photograph themselves holding a sign. A lot of people could be too sick to attend and this would give them a way to be represented. You could make some kind of online collage with the images.

[Sangye]

Pediatric cancer research gets less funding than anything else. For many peds cancers, they're still using the same drugs and protocols they've been using for 40 years. :sad:

[drz]

Most people have no clue about what diseases are consider auto immune disorders so many people have one without knowing it is considered an auto immune disorder. You might start by trying to compile a list of all AI disorders and making a poster or web site to increase awareness and then see about a large gathering of all involved.

[drz]

I read somewhere that breast cancer gets more funding that all other including more common cancers get combined. I wonder why that is? Maybe if we can figure out why then we can aply that to wegners.

Here are some facts about research grants in USA:
http://report.nih.gov/rcdc/categories/

I also read that breast cancer was more high funded partly because it was a woman"s issue for political reasons and partly because it had one of the best prognosis for reducing death rates if detected and treated early.

They do list auto immune disease on the list but also some auto immune diseases are listed separately but not GPA.

[Rini]

Thanks Sangye, that is the most susinct (sp?) and clear explanation of WG I've heard/read.

Rini, how you been? I've been thinking about you. Hope all is well.

As for AI diseases. I'm really thinking hard on how to get the media to grab on to the AI train like they have with Cancer. I think nobody has a clue how many people suffer in silence with various AI diseases. Some are easier to manage than others but they all wreak havoc on the patient's quality of life, and I think it's high time that popular culture knew what this umbrella of diseases is all about. I was thinking of having all the people in our town with AI diseases to come forward and we could have a dance or a party for awareness and have everyone with AI problems come up and hold a sign with the number of AI diseases they are sportin' - I think out of 4500 people (our town's population) I would have a pretty hefty number up there with a sign. That was just one idea.... I'm open to suggestions.

I am on campus and (when i get my sea lags) totally willing to find a plan 2 help raise awareness. I just have to remember to not drop the ball with everything. total zero -80 for me right now and I hope i can keep it up.


Also I'm still working on the book (going on a holiday to Hawaii for a couple of weeks - in a week) so I'll have some time to put things together there a little bit more. Any of you still in the midst of writing, send'em my way. I've been feeling really good lately and making hay while the sun shines.

I have mine & hope 2 get it edited and sent 2 u soon!

I've been keeping myself very very busy and have not had many opportunities to sit at the computer.
YAY! do you feel more like the old you or just a newer new you?

I do think about you guys often, just don't sit to type much. I also had my best blood test results since I got sick - only one flag but everything else ROCKED!!!!! ESR 6, CRP 2.2, no anemia, LFT's all within normal range. I've never been so happy to see my lab results.
CONGRATULATIONS! :hug3:

Now I feel like I can take on some projects to raise awareness, and stir the pot a little. :w00t:

It is really good 2 hear u r feeling better and its ok that u don't talk 2 us if u can be getting out. go green ;)p