Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
a brown ribbon outside the White House?
#161420 11/12/09 06:48 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
OP Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
This video commentary struck a chord with me - I've often felt the same mixed feelings about all the attention breast cancer gets. I know many of you feel the same about AS feeling like a "bastard stepchild" compared to other autoimmune disorders, too.

http://www.medscape.com/viewarticle/711810?src=mp&spon=42&uac=98966FZ

Medscape requires a login, but it's easy and free.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: a brown ribbon outside the White House?
JenInCincy #161434 11/12/09 08:03 PM
Joined: Nov 2001
Posts: 5,121
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Nov 2001
Posts: 5,121

A brown ribbon might be better suited to IBD than AS. smile



Spenser23


Re: a brown ribbon outside the White House?
Spenser23 #161436 11/12/09 08:23 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
OP Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
well, colon cancer, but yeah, the idea being lots of other stuff deserves attention, not just breast cancer (to wit: more people die from colon cancer than breast cancer!)


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: a brown ribbon outside the White House?
JenInCincy #161438 11/12/09 08:52 PM
Joined: Nov 2007
Posts: 246
N
Registered Visitor
Offline
Registered Visitor
N
Joined: Nov 2007
Posts: 246
Thanks for sharing Jen! It was interesting to watch and I agree with him. I have always felt very frustrated that AS doesn't get much attention. Besides breast cancer, other inflammatory autoimmune diseases such as Rheumatoid Arthritis get more attention and are well known. I am so sick and tired of when people ask what's wrong with me and why I use a cane, and I briefly explain that I have an inflammatory autoimmune disease called Ankylosing Spondylitis, they say, "never heard of it, is it like Rheumatoid Arthritis or a form of Rheumatoid Arthritis" because they have heard of RA, but of course not AS. Personally, I have a big beef with the Arthritis Foundation because of just that. Always talking about RA and OA in their magazine and never any attention to other just as devastating and important arthritis diseases such as AS (including AS in children and teens), PsA, and the others. A year or so ago, MANY of us here on the forum wrote emails and letters to the Arthritis Foundation urging them to start including information and education pertaning to AS and related diseases in their popular magazine since they are also arthritis diseases and many of us kindly (not attacking) shared our frustrations with the AF only having stories and articles about people with RA or OA, but as we figured nothing has changed, yet we wanted to try. I am SOOOOOOOOOO THANKFUL for the SAA and what they do for AS and related diseases since so many others don't seem to care. And that makes dealing and living with this disease more difficult and isolating. I will support the SAA until the day I die (and after) for what they do to help us.

And I agree with him, other cancers like colon should get attention too, not just breast cancer. I've often thought, does AS not get the same attention because in and of itself it's not fatal like cancers can be? Yet, that doesn't hold true for RA and why RA has so much more attention and is well known. That I don't understand. I wish it would change.

Was the SAA able to receive enough donated funds through the matched donations to be able to start doing public service announcements about AS and Spondylitis in general and posters sent to Drs offices? That would be a great start!

Kris

Re: a brown ribbon outside the White House?
norskegirl74 #161440 11/12/09 09:52 PM
Joined: Nov 2001
Posts: 5,121
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Nov 2001
Posts: 5,121
Sorry, I was just making a joke, but, obviously I share your concern about some diseases getting recognition out of proportion to the number of people they affect.

For me, the disease most out of proportion is Muscular Dystrophy, which, in all its forms, affects about 50,000 people in the U.S., yet they raise hundreds of millions of dollars each year for research.

We are making some strides in raising awareness of AS, but we still have a long way to go, imho.


Spenser23




Re: a brown ribbon outside the White House?
Spenser23 #161442 11/12/09 10:01 PM
Joined: May 2008
Posts: 13,279
J
Registered Visitor
OP Offline
Registered Visitor
J
Joined: May 2008
Posts: 13,279
Oh, no apology needed! Trust me, with an IBD kid, I've heard all the poop jokes. Not to mention I used to work on an improvement team that was trying to reduce the opiate related side effects in the hospital... of which #1 is, you guessed it, no #2!! INFINITE jokes there and the doctors make up the WORST ones laugh

You're right, fundraising for "celebrity endorsed" diseases is disproportionate. There is definitely a long way to go for the spondy diseases - I was SHOCKED when I learned that roughly the same # of people have AS as have MS. Yet MS gets so much more attention! However also frustrating - MS mostly gets press for the bad stuff when in reality it can often be a very mild disorder. I have a friend with MS who runs marathons!

But I digress. Yes, it's frustrating. Grr!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: a brown ribbon outside the White House?
JenInCincy #161446 11/12/09 10:47 PM
Joined: Nov 2001
Posts: 5,121
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Nov 2001
Posts: 5,121
Actually, I think the number is about 3 times as many people have AS as have MS. I think some websites still greatly undercount the number of people with AS.

The old line we used to use was that more people have AS than MS, Cystic Fibrous and Lou Gehrig's disease COMBINED.


Spenser23






Re: a brown ribbon outside the White House?
Spenser23 #161506 11/13/09 05:27 AM
Joined: Dec 2008
Posts: 2,183
W
Registered Visitor
Offline
Registered Visitor
W
Joined: Dec 2008
Posts: 2,183
Over 800 Iconic Monuments To Light In Blue As Millions Mark World Diabetes Day
http://www.voxy.co.nz/national/over-800-...tes-day/5/30183

what we need is World AS Day (or at least World Autoimmune Disease Day)

Re: a brown ribbon outside the White House?
winelover #161525 11/13/09 02:49 PM
Joined: Nov 2001
Posts: 5,121
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Nov 2001
Posts: 5,121
Yes, I seem to recall there was a World AS Day a while back ...

I'll look it up and get back to you.



Spenser23


Re: a brown ribbon outside the White House?
Spenser23 #161538 11/13/09 04:55 PM
Joined: Nov 2001
Posts: 5,121
S
Registered Visitor
Offline
Registered Visitor
S
Joined: Nov 2001
Posts: 5,121


There is an International AS organization, the ASIF, and I do believe there already has been a World AS day. In 2010, it is going to be on May 9th. (Just AFTER our "April is Spondylitis Month" campaign!!)

Stiffy the Snowspondy and SAA Executive Director, Laurie Savage attended an ASIF conference a year or so ago, in Prague. While there, Stiffy spoke with Marjan HUDOMALJ, M.Sc., the President of the AS Society of Slovenia. (see pic below)





http://www.asif.rheumanet.org/


The AS organization in the UK is already touting the 2010 World AS Day:

http://www.nass.co.uk/public/fundrasing.htm



Spenser23


Page 1 of 2 1 2

Moderated by  ElinAslanyan 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4