Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

24 May 2012

Waving for World Arthritis Day!

Please note that all comments in curly brackets { } are Wayney's.

Waving landing page

Get waving for World Arthritis Day!

Upload your waving photograph or video now and help us reach our target of capturing 100,000 people waving their support for people with rheumatic and musculoskeletal diseases.

It’s fun, it’s free and everyone can get involved!

Wave Waving hands, waving flags, waving in unusual places – get creative with your waving! We’ll be featuring the most inspiring photographs – the crazier your waving ideas the better! Every person seen waving counts; the more people you can show waving in your photograph or video, the faster we can reach our target! There’s also no limit to the number of photographs and videos you can upload so start photographing and videoing people waving and tell your friends and networks to do the same! You can upload your photographs and videos from a computer, tablet, iPhone, Android phone or Windows phone in five easy steps.
 

Click Here

and follow the five easy steps:

  • Upload your photograph or video
  • Tick the box to confirm you have the rights to the photo
  • Tell us how many people are waving in your photo or video
  • Select your country from the drop-down box
  • Submit your picture or video

Each photo or video will become a pixel within a giant picture,

which will be used on World Arthritis Day (12 October) to help us raise greater awareness of rheumatic and musculoskeletal diseases (RMDs) and the key issues that affect people with RMDs.
View The Gallery

{That is cool that each one is going to be part of a giant picture.}

If you want to guarantee your picture is included it needs to be uploaded by 16 September.

Be a part of the bigger picture for World Arthritis Day NOW! And tell your friends and wider social networks to upload their pictures too.

Facts and figures

Rheumatic and musculoskeletal diseases (RMDs) encompass more than 200 different conditions including inflammatory diseases from rheumatoid arthritis and ankylosing spondylitis to degenerative conditions like osteoarthritis and osteoporosis. In the industrialized world RMDs affect more individuals than any other disease group.

More than 120 million people across Europe alone are affected by RMDs

One third of all people are affected by rheumatic diseases at some point in their lifetime
Up to 85% of people will suffer from lower back pain at some point in their lives
Source: http://www.worldarthritisday.org/waving


{Above the number of people affected by RMDs is for Europe, so I wanted to add some US statistics. But the info would make this post too long. So please see my post titled: US Statistics for Arthritis for information on arthritis in the US.}

20 May 2012

 

Source: http://www.facebook.com/WorldAutoimmuneArthritisDay


Stop hiding, start fighting.


You can't be born with "arthritis" but you CAN be born with an AUTOIMMUNE ARTHRITIS DISEASE!


Source:: http://www.facebook.com/WorldAutoimmuneArthritisDay


May 20, 2022



Source: http://www.facebook.com/WorldAutoimmuneArthritisDay


Just because I don't always look sick...


Source:http://www.facebook.com/WorldAutoimmuneArthritisDay


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!


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
 


 
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



 

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 







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
  

 



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



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/WAAD.html (tax receipts will be provided).


Source: http://www.facebook.com/WorldAutoimmuneArthritisDay


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.


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

Patient Advocate Presentations

Patient Advocate Presentations


Today we feature our THIRTEEN Patient Advocates who are creating short, downloadable presentations for the World Autoimmune Arthritis Day online Virtual Convention starting May 19th at 3am PT/USA and ending May 21st at 2am PT/USA. Since these presentations are pre-recorded they will be available to you to watch at your leisure at any time during the 47 hour event.

World Autoimmune Arthritis Day is an online FREE Virtual Convention consisting of presentations, live chats, downloadable take away resources, live Call to Action Awareness Posts and Surveys (that will be used to create educational documents for the medical world and to provide research to promote earlier diagnosis). Register Today for FREE at www.WorldAutoimmuneArthritisDay.org .

Presentation #1 of 13 - “Being Your Own Self Advocate”

“Arthritis Ashley”, creator and moderator of Rheum to Grow for Young Adults with Arthritis on Facebook and blogs for the Mid Atlantic Region of the Arthritis Foundation (USA) and in her blog series "Ashley's Health Diary” (formerly called Ashley's Journey to Wellness). Ashley will be recording a short On Demand Presentation “Being Your Own Self Advocate”. 
https://www.facebook.com/pages/Rheum-to-Grow-For-Teens-Young-Adults-with-Arthritis-Related-Disease/271567550644?ref=ts

http://midatlanticarthritis.wordpress.com/

www.arthritis.org

Presentation #2 of 13 - “Understanding the Autoimmune Arthritis Diseases”

Tami Caskey Brown, Co-Founder and Officer of the International Autoimmune Arthritis Movement, will be recording a short On Demand Presentation “Understanding the Autoimmune Arthritis Diseases”.

Presentation #3 of 13 - “What I CAN Do!”

Kristy Long, Co-Founder of the DREAM Institute & Chair of the Board, will be recording a short On Demand Presentation “What I CAN Do!”

www.dreaminstitute.org  

Presentation #4 of 13 - “Supporting Someone Who is Living with Autoimmune Arthritis”

Cherie Hambleton (PsA/RA), founder of the Arthritis & Autoimmune Support (AAIS) group based on the Sunshine Coast, Queensland, Australia, will be recording a short On Demand Presentation “Supporting Someone Who is Living with Autoimmune Arthritis”.

Presentation #5 of 13 - “Self Esteem and Autoimmune Arthritis”

Emily, Founder of Facebook Group and Blog Chronic Curve, will be recording a short On Demand Presentation “Self Esteem and Autoimmune Arthritis”.

https://www.facebook.com/chroniccurve?ref=ts

http://chroniccurve.tumblr.com/

Presentation #6 of 13 - “Autoimmune Arthritis in the Workplace”

Sarah Clark, Founder of Super Young Arthritics of Wellington (New Zealand), will be recording a short On Demand Presentation “Autoimmune Arthritis in the Workplace”.
http://www.facebook.com/superyoungarthriticsofwellington
  

Presentation #7 of 13 - “Coping as a Parent Living with Autoimmune Arthritis”

Brigid and Peggy, Founders of Facebook Group ‘Squeaky Joints’ and Bloggers of ‘My Rheumatoid Arthritis Journey’ (Brigid) and Forward Motion with Rheumatoid Arthritis (Peggy), will be recording a short On Demand Presentation “Coping as a Parent Living with Autoimmune Arthritis”. http://raawareness.blogspot.com/
http://raforwardmotion.blogspot.com/
http://www.squeakyj.com/
http://www.facebook.com/SqueakyJoints

Presentation #8 of 13 - “Parenting a Child Who Lives with Autoimmune Arthritis”

Stacey and Danielle, Bloggers and parents of JAers- ‘My 10 Year Old is an Old Lady that Turns Purple’ (Danielle) and ‘Life Autoimmune’ (Stacey) will be recording a short On Demand Presentation “Parenting a Child Who Lives with Autoimmune Arthritis”. 

Presentation #9 of 13 - “Maximizing Your Healthy Time”

Kirsten Walters, Blogger and Creator of the Facebook Page “Not Standing Still’s Disease”, will be recording a short On Demand Presentation “Maximizing Your Healthy Time”.
http://www.notstandingstillsdisease.com/
http://www.facebook.com/NotStandingStillsDisease

Presentations #10 and #11 of 13 - “Vision” and “Dental” Issues for those Affected with Autoimmune Arthritis

Tristan Moore, International Autoimmune Arthritis Movement Volunteer, will be recording two short On Demand Presentations on “Vision” and “Dental” Issues for those Affected with Autoimmune Arthritis.

Presentation #12 of 13 - “Step by Step Fitness for Autoimmune Arthritis”

Marie Hilferty, Rheumatoid Arthritis patient and AFAA certified Personal Trainer and Group Exercise Instructor and AAAI Certified Trainer will be recording a short On Demand Presentation “Step by Step Fitness for Autoimmune Arthritis”. 

Presentation #13 of 13 - “Natural Nutrition”

Kay Hawkes, Creator of the Facebook Page and Twitter account ‘Thrive With Lupus” and freelance medical writer and holistic advocate, will be recording a short On Demand Presentation “Natural Nutrition”.

https://www.facebook.com/ThrivewithLupus
www.womanbynature.com
     
 

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."

Only 6 more days!!

The Countdown to WAAD continues. 6 DAYS til the virtual doors open!