Source: http://www.facebook.com/WorldAutoimmuneArthritisDay
Showing posts with label IAAM. Show all posts
Showing posts with label IAAM. Show all posts
20 May 2012
19 May 2012
World Autoimmune Arthritis Day Feature Stories
I am posting these feature story posts from WAAD's Facebook site in order to help spread the word.
One of our original WAAD advertisements featured Maddox, diagnosed with
Juvenile Arthritis at age 17 months. Today Maddox is 22 months and just
took his first steps ON HIS OWN 3 weeks ago!
For these last 8 days leading to World Autoimmune Arthritis Day we will post one Feature Story each day to show what Autoimmune Arthritis is all about. Maddox is our 1st Feature Story!
Please click on this link: http://www.iaamovement.org/uploads/Final.pdf to view the updated story on Maddox.
Make sure to click on the link at the end to watch a 20 second video of him walking!
For these last 8 days leading to World Autoimmune Arthritis Day we will post one Feature Story each day to show what Autoimmune Arthritis is all about. Maddox is our 1st Feature Story!
Please click on this link: http://www.iaamovement.org/uploads/Final.pdf to view the updated story on Maddox.
Make sure to click on the link at the end to watch a 20 second video of him walking!
Each day during our Countdown to World Autoimmune Arthritis Day we will
feature another patient story. Feature Story #2; Amie:
Meet Amie, Ankylosing Spondylitis (AS) Patient, diagnosed originally in the 1990’s, when information was not readily available, Amie was lucky to find a doctor to diagnose her, treat her and send her into remission for 17 years. Almost 2 decades later, when the AS resurfaced, because she did not exhibit text book symptoms, and because most doctors she visited did not believe a woman who was HLA-B27 negative could have AS, she was left untreated for years…until she took her health into her own hands and searched for a doctor who would listen. TO VIEW HER STORY, PLEASE CLICK ON THIS LINK:
http://www.iaamovement.org/uploads/amie_final.pdf
Meet Amie, Ankylosing Spondylitis (AS) Patient, diagnosed originally in the 1990’s, when information was not readily available, Amie was lucky to find a doctor to diagnose her, treat her and send her into remission for 17 years. Almost 2 decades later, when the AS resurfaced, because she did not exhibit text book symptoms, and because most doctors she visited did not believe a woman who was HLA-B27 negative could have AS, she was left untreated for years…until she took her health into her own hands and searched for a doctor who would listen. TO VIEW HER STORY, PLEASE CLICK ON THIS LINK:
http://www.iaamovement.org/uploads/amie_final.pdf
Our Countdown to WAAD brings us to Feature Story #3, Stephanie:
As a child Stephanie showed signs of Juvenile Arthritis, but it was not recognized by her doctors. Autoimmune Arthritis ran in her family so her mother and aunt picked up on the signs. What’s so amazing about this? Stephanie is adopted. She couldn’t have been placed with a more compassionate and understanding family. To read Stephanie's full story, please visit this link:
http://www.iaamovement.org/uploads/Final_Stephanie.pdf
As a child Stephanie showed signs of Juvenile Arthritis, but it was not recognized by her doctors. Autoimmune Arthritis ran in her family so her mother and aunt picked up on the signs. What’s so amazing about this? Stephanie is adopted. She couldn’t have been placed with a more compassionate and understanding family. To read Stephanie's full story, please visit this link:
http://www.iaamovement.org/uploads/Final_Stephanie.pdf
Meet Gavin World Autoimmune Arthritis Day Feature Story #4:
This little guy has been through so much in his short life, including eye surgery due to Juvenile Arthritis. It's not the same type of arthritis as degenerative, this kind affects organs too. Learn more about Gavin by viewing our World Autoimmune Arthritis Day Feature Story #4: http://www.iaamovement.org/uploads/Meet_Gavin_tw.pdf
This little guy has been through so much in his short life, including eye surgery due to Juvenile Arthritis. It's not the same type of arthritis as degenerative, this kind affects organs too. Learn more about Gavin by viewing our World Autoimmune Arthritis Day Feature Story #4: http://www.iaamovement.org/uploads/Meet_Gavin_tw.pdf
Meet Wendy, World Autoimmune Arthritis Day Feature Story #5:
There were several points in Wendy's journey when a simple inquiry by a well educated primary doctor or podiatrist could have saved her from years of pain and frustration. She had very clear, classic signs of psoriatic arthritis since her teens and early 20's but it took her over a decade to get diagnosed. To read Wendy's full story please visit:
http://www.iaamovement.org/uploads/wendy.pdf
There were several points in Wendy's journey when a simple inquiry by a well educated primary doctor or podiatrist could have saved her from years of pain and frustration. She had very clear, classic signs of psoriatic arthritis since her teens and early 20's but it took her over a decade to get diagnosed. To read Wendy's full story please visit:
http://www.iaamovement.org/uploads/wendy.pdf
Meet Ronan, World Autoimmune Arthritis Day Feature Story #6
Ronan may just have been an example of ‘being born with Autoimmune Arthritis’. He was seemingly in pain since birth, unable to sleep, constant crying and as a baby he experienced high fevers, sweating and rashes. Blood tests and x-rays “were normal” so not much was done until his joints started visibly swelling and injuries were eventually ruled out. Over 2 ½ years of waiting, the parents finally received a diagnosis of Juvenile Arthritis. To read his full story, click here:
http://www.iaamovement.org/uploads/ronan.pdf
Ronan may just have been an example of ‘being born with Autoimmune Arthritis’. He was seemingly in pain since birth, unable to sleep, constant crying and as a baby he experienced high fevers, sweating and rashes. Blood tests and x-rays “were normal” so not much was done until his joints started visibly swelling and injuries were eventually ruled out. Over 2 ½ years of waiting, the parents finally received a diagnosis of Juvenile Arthritis. To read his full story, click here:
http://www.iaamovement.org/uploads/ronan.pdf
If you know someone who wants to help support WAAD on a personal level, let them know they can donate $100 to honor someone with Autoimmune Arthritis.
A photo of the patient (OR photo representing them if they choose to remain anonymous),... first name, disease onset age and short message will be added to the Official Honor's Wall that will be posted during the event. Families, friends, co-workers... honor those you support today! www.IAAMovement.org/
Source: http://www.facebook.com/WorldAutoimmuneArthritisDay
18 May 2012
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!
Nonprofit Supporters Include:
The International Autoimmune Arthritis Movement (USA, Official Host)
The American College of Rheumatology (USA)
Spondylitis Association of America (USA)
Arthritis Research Foundation (Canada)
Arthritis Introspective (USA)
National Organization for Rare Diseases (USA)
The Dream Institute (USA)
Lupus UK (United Kingdom)
The Purple Rose Foundation (USA)
Sjogren's Syndrome Foundation (USA)
Arthritis National Research Foundation (USA)
International Still’s Disease Foundation (USA)
Arthritis New Zealand (NZ)
Lupus Foundation of Ontario (Canada)
The Jeffrey Gottfurcht Children's Arthritis Foundation (USA)
The Canadian Spondylitis Association (Canada)
Special Supporters: World Arthritis Day (WAD)
15 May 2012
Differentiate Your Arthritis. Then they'll understand
Differentiate Your Arthritis. Then they'll understand.
While
Degenerative Arthritis CAN begin in younger individuals due to injury
or wear and tear, it typically occurs after the age of 55. Autoimmune
Arthritis is a disease of the immune system. You can be born with it.
Due to my having JRA (now termed JA) at the age of 7, I was diagnosed with osteoarthritis by the time I was 9 or 10.
Due to my having JRA (now termed JA) at the age of 7, I was diagnosed with osteoarthritis by the time I was 9 or 10.
Live Presentations for World Autoimmune Arthritis Day
Live Presentations for World Autoimmune Arthritis Day
Presentation 1 - “Navigating Your Day with Autoimmune Arthritis”
First Presenter, Dana Morningstar, Blogger and Internet Radio Show Host of Already Gave My Right Arm To Be Ambidextrous! and Chairperson of the US Arthritis Foundation’s Young Professional Group, will lead a LIVE 30 minute Presentation “Navigating Your Day with Autoimmune Arthritis”, which will allow for 10 minutes of a chat-style Question and Answer segment in which YOU can participate!The Live Presentation is scheduled for Saturday the 19th 6pm Pacific Time/ 9pm Eastern Time, USA which is also 1pm Sunday the 20th in the first global time zone (New Zealand). If you miss the live version it will be taped and available as an On Demand Presentation that can be viewed during the 47 hour event.
http://gavertarm2bambidextrous.blogspot.com/
http://www.blogtalkradio.com/danamorningstar
https://www.facebook.com/groups/41972092592/
Presentation 2 - “Intimacy and Autoimmune Arthritis”
Jennifer Dye Visscher, founder of The Feeding Edge and Walk Your A.S Off and Arthritis Foundation (USA) Speaker, will be leading the 30 minute Live Presentation “Intimacy and Autoimmune Arthritis” which will be co-hosted with her husband, Doug. This presentation will allow for 10 minutes of a chat-style Question and Answer segment in which YOU can participate and is sponsored by Spondylitis Association of America.The Live Presentation is scheduled for Saturday the 19th 2pm Pacific Time/ 5pm Eastern Time, USA which is also 9am Sunday the 20th in the first global time zone (New Zealand) and 10pm Saturday in the UK. If you miss the live version it will be taped and available as an On Demand Presentation that can be viewed during the 47 hour event.
Presentation 3 - “Who Am I Now? Living With Unexpected Dis...ability”.
The last of 3 Live Presentations, which will be hosted by Tiffany Westrich, Founder & CEO of The International Autoimmune Arthritis Movement and World Autoimmune Arthritis Day Event Coordinator, is “Who Am I Now? Living With Unexpected Dis...ability”. This 30 minute presentation will allow for 10 minutes of a chat-style Question and Answer segment in which YOU can participate!The Live Presentation is scheduled for Sunday the 20th 2pm Pacific Time/ 5pm Eastern Time, USA which is also 9am Monday the 21st in the first global time zone (New Zealand) and 10pm Sunday in the UK. If you miss the live version it will be taped and available as an On Demand Presentation that can be viewed during the 47 hour event.
www.IAAMovement.org
www.facebook.com/InternationalAutoimmuneArthritisMovement
14 May 2012
5 Days Until the World Understands
In 5 days the world will begin to understand.
Register for FREE at www.WorldAutoimmuneArthritisDay.ogg!
WAAD Live Chat Sessions
The World Autoimmune Arthritis Day Virtual Convention will consist of 4 Live Breakout Chat Sessions.
Chat 1 - “The Invisibility of Autoimmune Arthritis Diseases”
Abigail, Founder of Project MCTD Aware (Facebook Page, Website and Blog), will be Hosting a Live Chat Session “The Invisibility of Autoimmune
Arthritis Diseases”. This Live Chat will run for 45 minutes in a Chat
Room separated from the main “Lounge”, which is a large Chat Room
available for the full 47 hour event. Abigail will lead this discussion
and YOU can participate just by registering for FREE at World Autoimmune
Arthritis Day at www.WorldAutoimmuneArthritisDay.org!
This Live Chat Session is scheduled for Sunday the 20th 12pm Pacific
Time/ 3pm Eastern Time, USA which is also 7am Monday the 21st in the
first global time zone (New Zealand) and 8pm Sunday in the UK. If you
miss the live version it will be taped and available as an On Demand
Presentation that can be viewed during the 47 hour event.
Project MCTD Aware – Facebook: http://www.facebook.com/pages/Project-MCTD-Aware/245018145531027
Blog: http://www.livingwithmctd11.blogspot.co.uk/
Website: www.project-mctd-aware.com
Chat 2 - “The Myths About Autoimmune Arthritis Diseases”
Niki Wyre, Founder & CEO of RA Chicks : Women with Rheumatoid Arthritis
(Facebook Page, Website and Blog), will be Hosting a Live Chat Session
“The Myths About Autoimmune Arthritis Diseases”. This Live Chat will
run for 45 minutes in a Chat Room
separated from the main “Lounge”, which is a large Chat Room available
for the full 47 hour event. Niki will lead this discussion and YOU can
participate just by registering for FREE at World Autoimmune Arthritis
Day at www.WorldAutoimmuneArthritisDay.org!
This Live Chat Session is scheduled for Sunday the 20th 5pm Pacific Time/ 8pm Eastern Time USA which is also 12pm Monday the 21st in the first global time zone (New Zealand).
RAChicks – Facebook: http://www.facebook.com/RAChicks
Website: www.RAChicks.com
Chat 3 - “Being Your Own Self Advocate”
Our 3rd Live Chat Session will be hosted by a team! Waynette Porter,
International Autoimmune Arthritis Movement Volunteer and Moderator at
4RATalk.com, and Marcy Dyer, Founder of Gimps (Facebook Group) and
International Autoimmune Arthritis
Movement Volunteer, will be Hosting a Live Chat Session together “Being
Your Own Self Advocate”. This Live Chat will run for 45 minutes in a
Chat Room separated from the main “Lounge”, which is a large Chat Room
available for the full 47 hour event.
This Live Chat Session is scheduled for Saturday the 19th 12pm Pacific Time/ 3pm Eastern Time, USA which is also 7am Sunday the 21st in the first global time zone (New Zealand) and 8pm Saturday in the UK.
www.4RATalk.com
https://www.facebook.com/groups/RAGimp/
www.IAAMovement.org
Chat 4 - “Remaining Positive with a Chronic Illness”
Our 4th and final Live Chat Session host is Char Willingham, health, wellness & fitness blogger of The Positive Pear (Ankylosing Spondylitis). Her chat “Remaining Positive with a Chronic Illness” will run for 45 minutes in a Chat Room separated
from the main “Lounge”, which is a large Chat Room available for the
full 47 hour event. Char will lead this discussion and YOU can
participate just by registering for FREE at World Autoimmune Arthritis
Day at www.WorldAutoimmuneArthritisDay.org!
This Live Chat Session is scheduled for Saturday the 19th 6am Pacific Time/ 9am Eastern Time, USA which is also 1am Monday the 21st in the first global time zone (New Zealand) and 2pm Sunday in the UK.
http://thepositivepear.com/
https://www.facebook.com/ThePositivePear
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!
13 May 2012
We ALL start out invisible!
We all start out invisible.
The Countdown to WAAD continues. 6 DAYS til the virtual doors open! The sign says it all. "Stop hiding, start fighting! Awareness...it's time."
12 May 2012
Differentiate Your Arthritis!
Differentiate Your Arthritis!
The Countdown to World Autoimmune Arthritis Day continues...7 days to go!
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!).
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.
11 May 2012
Invisible
Autoimmune Arthritis diseases are often "invisible", meaning the disability and seriousness of the diseases is masked. IAAM believes we all are VISIBLE, if we show it.
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