Showing posts with label News. Show all posts
Showing posts with label News. Show all posts

16 May 2012

Autoimmune vs Degenerative


Just a few more days and WAAD will begin! Knowing the difference between autoimmune and degenerative arthritis is so important to understand why both are painful, but one can lead to severe consequences up to and including death. I don't say that as a scare tactic. I say it in an effort to  get people to see how serious the autoimmune types of arthritis can be. Arthritis, no matter the type sucks. But there are types that are treated with drugs that also treat cancer (albeit in lower doses), which should tell you how serious they are. Autoimmune arthritis can range from mild to severe. It can cripple a person from an early stage. It can affect your eyes, your voice, your lungs, your heart, your circulatory system, your digestive system and I am likely leaving something off as I am exhausted right now. Oh it can cause fevers, rashes, extreme fatigue, and body-wide pain.  But what, oh you say the word arthritis means inflammation of the joints? Well yeah it does that too, in addition to all the other things I've mentioned. In some of us, while we have pain and inflammation and stiffness in our joints, it can be less of a problem for us than the other ways that autoimmune arthritis affects us. Just because you hear the term arthritis, it doesn't mean it's something easily treated. Off the top of my head, I cannot remember the statistic, but a certain percentage of people with rheumatoid arthritis are considered disabled within 10 years of diagnosis. That is a scary thought. It tells me that treatments are not always as effective as television commercials make them out to be. I don't have Psoriatic Arthritis (another form of an autoimmune arthritis) but I find the Phil Mickelson commercials for Enbrel absolutely LAUGHABLE. Sure for some people biologic response modifiers (BRMs) like Enbrel, Humira and the others work in an almost miraculous way from the first dose. But those people are few and far between. I think commercials like that one give people false expectations. But drug companies just want to sell their meds. And who can blame them with how profitable those meds are! But I also think they have a responsibility to be more accurate in the picture they paint of the success of their meds. But that isn't likely to happen anytime soon. 

The world definitely needs to understand. They need to understand just how autoimmune arthritis can affect not just the person who has the disease itself, but all of their family, friends, co-workers, and employers. It can be devastating for some people. But most  people who hear the word arthritis, equate it with a degenerative type such as OA. While OA can affect multiple joints, it just does NOT have the systemic effects that the autoimmune types of arthritis have. I am not saying that one hurts more than the other. Pain is objective and difficult to measure. But the types of autoimmune arthritis are more difficult to treat, are more serious is nature, are treated by medications that are heavy duty, full on scary for some people. Left untreated, RA is almost guaranteed to cause serious joint damage. But treated, the damage can be slowed and minimized, especially if one can find a drug that treats the disease itself and not just the symptoms, that one reacts well to. For so many, they only get moderate or even minimal response to a drug, but many choose even a small amount of response over none. I know I do. I know that I will NOT, by choice at least, be without a DMARD at the very least. A DMARD is a disease modifying anti-rheumatic drug. I was without a DMARD for too long during the months I was in the hospital and ended up with contractures in my ankles, toes, most of my fingers, wrists, and elbows. Thankfully the ones in my fingers, wrists and elbows have reversed, minus my left pinkie finger. My ankles and feet did not reverse. My PT was able to get a tiny bit of flexion in my ankles but not much. He and others have said to fix the ankles will require surgery. Now, having spent 11 months in a hospital and 2 years in a nursing home, there is NO WAY I want to even consider anything that would send me back to either place any time in the near future. And I loved the staff at both places. I got to know the nursing home staff better since I was alert the whole time I lived there and was there two years. But as much as I love both the staff and residents, I do NOT want to go back to stay anytime soon. Sorry guys! I'll gladly visit, but I wanna go home at day's end and sleep in my own (hospital) bed!


14 May 2012

World Autoimmune Arthritis Day was published on Yahoo News!

World Autoimmune Arthritis Day was published on Yahoo News!  


http://news.yahoo.com/world-au  toimmune-arthritis-day-groundbreaking-online-virtual-convention-070336439.html


World Autoimmune Arthritis Day: Groundbreaking Online Virtual Convention for those Affected by Autoimmune Arthritis Diseases

World Autoimmune Arthritis Day (WAAD) is a free global Online Virtual Convention that invites patients and supporters to attend Virtual Presentations and Chat Sessions, download countless educational information and talk to others globally in real-time who are also affected by Autoimmune Arthritis Diseases. Free Registration. 
Continue Reading on Yahoo News!

 

12 May 2012

World Autoimmune Arthritis Day – What are YOU doing on May 19th, 2012?

World Autoimmune Arthritis Day – What are YOU doing on May 19th, 2012? From WEGO Health by Susan
Did you know that May 19th-20th marks a 47-hour period known as World Autoimmune Arthritis Day? Health Activists all over the world will be taking part in an international awareness effort and there are plenty of ways for you to get involved (whether you have arthritis or not!).


Tiffany Westrich, founder/CEO of the International Autoimmune Arthritis Movement (IAAM) and Event Coordinator of World Autoimmune Arthritis Day was gracious enough to answer a few questions for us on the importance of WAAD and how YOU can get involved. 
[Please read the rest of this article here on WEGO Health. It is an excellent article!]

09 May 2012

World Autoimmune Arthritis Day Registration.wmv




World Autoimmune Arthritis Day: Groundbreaking Online Virtual Convention for those Affected by Autoimmune Arthritis Diseases

  

World Autoimmune Arthritis Day: Groundbreaking Online Virtual Convention for those Affected by Autoimmune Arthritis Diseases
 
World Autoimmune Arthritis Day (WAAD) is a free global Online Virtual Convention that invites patients and supporters to attend Virtual Presentations and Chat Sessions, download countless educational information and talk to others globally in real-time who are also affected by Autoimmune Arthritis Diseases. Free Registration.

Worldwide (PRWEB) April 15, 2012
On May 20th, 2012, the 1st World Autoimmune Arthritis Day (WAAD) will happen online in the form of a Virtual Convention, spotlighting awareness and educational materials for those affected by these serious and sometimes life threatening diseases. Free Registration at the event site: http://www.WorldAutoimmuneArthritisDay.org . Registration Invitation link can be found at http://youtu.be/I38vA-fqlik

Interact with patients, supporters, nonprofits and advocacy groups from around the world during this 47 hour online event that will feature 16 Live and On Demand Presentations from Patient Experts, Chat Sessions, a Resource Room filled with downloadable, free educational materials and several scheduled Live “Call to Action Awareness Posts” that will occur every 6 hours. Dozens of nonprofits around the world will be participating, including the Spondylitis Association of America, Lupus UK, the Sjogren's Syndrome Foundation and WAAD hosts, the International Autoimmune Arthritis Movement.

“This free event is aimed to bring awareness and education about Autoimmune Arthritis diseases to patients, their supporters, doctors, researchers and the public. It will largely focus on the serious, and often misunderstood, nature of these diseases as well as the impact it has on the lives of those affected,” explains Tiffany Westrich, Event Coordinator and CEO of the International Autoimmune Arthritis Movement. “We are working hard to ensure all subjects are covered, from what signs parents can look for to addressing the question “Who Am I Now?” to learning tips for making daily tasks a little easier. WAAD will have a little something for everyone!” 

Autoimmune Arthritis diseases include: Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Primary Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease (SD), Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCT
World Autoimmune Arthritis Day: Groundbreaking Online Virtual Convention for those Affected by Autoimmune Arthritis Diseases
 
World Autoimmune Arthritis Day (WAAD) is a free global Online Virtual Convention that invites patients and supporters to attend Virtual Presentations and Chat Sessions, download countless educational information and talk to others globally in real-time who are also affected by Autoimmune Arthritis Diseases. Free Registration.

Worldwide (PRWEB) April 15, 2012
On May 20th, 2012, the 1st World Autoimmune Arthritis Day (WAAD) will happen online in the form of a Virtual Convention, spotlighting awareness and educational materials for those affected by these serious and sometimes life threatening diseases. Free Registration at the event site: http://www.WorldAutoimmuneArthritisDay.org . Registration Invitation link can be found at http://youtu.be/I38vA-fqlik

Interact with patients, supporters, nonprofits and advocacy groups from around the world during this 47 hour online event that will feature 16 Live and On Demand Presentations from Patient Experts, Chat Sessions, a Resource Room filled with downloadable, free educational materials and several scheduled Live “Call to Action Awareness Posts” that will occur every 6 hours. Dozens of nonprofits around the world will be participating, including the Spondylitis Association of America, Lupus UK, the Sjogren's Syndrome Foundation and WAAD hosts, the International Autoimmune Arthritis Movement.

“This free event is aimed to bring awareness and education about Autoimmune Arthritis diseases to patients, their supporters, doctors, researchers and the public. It will largely focus on the serious, and often misunderstood, nature of these diseases as well as the impact it has on the lives of those affected,” explains Tiffany Westrich, Event Coordinator and CEO of the International Autoimmune Arthritis Movement. “We are working hard to ensure all subjects are covered, from what signs parents can look for to addressing the question “Who Am I Now?” to learning tips for making daily tasks a little easier. WAAD will have a little something for everyone!” 

Autoimmune Arthritis diseases include: Rheumatoid Arthritis (RA), Psoriatic Arthritis (PsA), Ankylosing Spondylitis (AS), Primary Sjogren's Syndrome (SS), Systemic Lupus Erythematosis (SLE), Still's Disease (SD), Juvenile Arthritis (JA), Mixed and Undifferentiated Connective Tissue Diseases (MCTD/UCTD/SpA). WAAD will also recognize ‘Related Diseases’ during this event. Sponsor and Vendor opportunities are available through May 1st, 2012. It is also possible to make a donation in honor of someone afflicted by an Autoimmune Arthritis disease. For more information, please contact Tiffany at: tiffany@IAAMovement.org . You may also visit our Facebook Page at http://www.facebook.com/WorldAutoimmuneArthritisDay or follow us at http://www.twitter.com/WAutoimmuneAD
D/SpA). WAAD will also recognize ‘Related Diseases’ during this event. Sponsor and Vendor opportunities are available through May 1st, 2012. It is also possible to make a donation in honor of someone afflicted by an Autoimmune Arthritis disease. For more information, please contact Tiffany at: tiffany@IAAMovement.org . You may also visit our Facebook Page at http://www.facebook.com/WorldAutoimmuneArthritisDay or follow us at http://www.twitter.com/WAutoimmuneAD


Contact Information
Tiffany Westrich
International Autoimmune Arthritis Movement

310-295-7369



09 April 2007

Ok, this is cool. Thanks to my friends at 4RATalk I'm now hosting a daily chat at 2 pm EST or EDT, pending season. This is for arthritis and related conditions. Doesn't mean exactly that there will be a topic or anything like that. Just that I am "hosting". You have to be a member there to use the chat. And please don't just register to come spam us!