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On the Radar for May Awareness Events! Get Involved, Get Educated, Get Empowered!

I’m baaack! Final exams are over, I moved out of my horrible apartment complex, and am home in south Florida for a little while to regroup, see doctors, and focus on May advocacy events.

Speaking of advocacy events, these should be on your radar this month:

  1. World Autoimmune Arthritis Day! May 20, 2013— second annual WAAD! This time, it’s going to be twice the size of last year’s event! I will be giving a presentation on self esteem, self love, and autoimmune arthritis. More to come about how to register (it’s completely free!), what you can expect, and how to attend from the comfort of your couch!* Not sure what qualifies as Autoimmune Arthritis? Learn more here!

  2. For the Love of Laura. If you don’t already know, there has been a facebook page established in Laura’s (of Still’s Life.com— you can read more about her here) memory. On May 10th, there will be a 10 minute memorial/moment of silence and Laura’s family asks that you attend the page for the event. Please stop by and share some love, a kind story, or little bit about how Laura’s blog/story reached you. More details to come.

  3. Arthritis Awareness Month— this year’s theme is I Am the Face of Arthritis. More info soon about how to participate and what you can expect here on Chronic Curve to celebrate the month.

  4. World Lupus Day— May 10th, 2013. Don’t forget to sign the awareness pledge!

  5. World Ankylosing Spondylitis Day— May 4, 2013! How many of you Walked Your AS off in celebration this year? 


Check back shortly for more event pages this week.

    • #Chronic illness
    • #Chronic pain
    • #Arthritis
    • #World Autoimmune Arthritis Day
    • #WAAD
    • #Laura
    • #Still's Disease
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #MCTD
    • #UCTD
    • #Sjogren's
    • #Lupus
    • #SLE
    • #Ankylosing Spondylitis
    • #Psoriatic Arthritis
    • #Reactive Arthritis
    • #Scleroderma
    • #Polymyositis
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Autoimmune
    • #Medicine
    • #Awareness
    • #Awareness event
    • #Patient advocacy
    • #Health
  • 1 week ago
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Have you registered yet? Click the photo to register!
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Have you registered yet? Click the photo to register!

    • #International Autoimmune Arthritis Movement
    • #IAAM
    • #World Autoimmune Arthritis Day
    • #Arthritis
    • #Rheumatoid Arthritis
    • #MCTD
    • #Ankylosing Spondylitis
    • #AS
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #Lupus
    • #SLE
    • #Autoimmune
    • #Health
    • #Medicine
    • #Advocacy
    • #Event
  • 1 year ago
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Exciting News! Chronic Curve Will Be Presenting at World Autoimmune Arthritis Day!

I am both flattered and honoured to be a presenter at the first international World Autoimmune Arthritis Day! 

                      

As part of the event (you can register here), there will be sixteen downloadable presentations and live chat sessions hosted by patient advocates. I will be doing a presentation on self esteem and maintaining a positive, loving relationship with yourself despite autoimmunity— something I challenge all of my readers to find.

Have you registered for WAAD yet? It’s completely free; all you need to register with is your name, an email address, and whatever (if any) type of Autoimmune Arthritis you may have. Registering gives you access to these presentations, resources, downloadable tip sheets, vendor merchandise discounts (my bracelets will be included), live chat rooms, live chat sessions, and much more. You do not need to have an autoimmune disease to register or participate— the event is as much for loved ones, friends, family, physicians, and any other supports as it is for patients.

    • #Autoimmune
    • #Autoimmune arthritis
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #AS
    • #Lupus
    • #SLE
    • #WAAD
    • #World Autoimmune Arthritis Day
    • #Arthritis
    • #CC News
    • #:)
  • 1 year ago
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The Arthritis Name Game: 5 Reasons to Stop Using the A-Word

There is a devastating problem in the world of Autoimmune Arthritis that inhibits us from receiving the care, validation, and funding that we so desperately need.

For those of us with diseases like Lupus, Ankylosing Spondylitis, Still’s Disease, etc, we have a name. While our name might not get the awareness it needs, it has a unique name of its own.  It is not confused with another condition due to name alone. It does not suggest elderly, doesn’t bring about thoughts of Tylenol or old-age, or advertisements of seniors dancing.

Those diseases with unique names? They have individual organizations, both national and international, that help patients and have been for years. But Rheumatoid Arthritis? The first and only US organization just established itself this year (which you can learn more about here), despite 1-3% of women, over 300,000 children, and over 2 million people overall in the US being afflicted by this autoimmune disease.  

Those of us with Rheumatoid Arthritis, Juvenile Arthritis, Juvenile Idiopathic Arthritis, and Juvenile Rheumatoid Arthritis (which, truthfully, hardly vary in etiology whatsoever) are left in the dark. We are lumped together under the A word by organizations (and patients!!) that lump us together and, like dust swept under the rug, our symptoms are swept aside and pushed far up underneath that umbrella until no one realizes just how dangerous and serious these conditions are.
 

I have come to despise the A-word. But more than I despise the A-word, I despise seeing fellow bloggers and tumblr users using the A-word. It is time to stop using the A-word improperly!
 

You know what A-word I’m talking about: ARTHRITIS.
 

  1. “Arthritis” IS NOT Autoimmune Arthritis, so when you say “let’s fight Arthritis together,” you are not reclaiming your disease.

     
  2. Using the A word does not help others understand the seriousness of your disease or become aware and more knowledgeable about autoimmunity.  
     

     
  3. Why is this important? People are not going to donate their time or money to “arthritis” when you can just take Tylenol and Glucosamine supplements! People will, however, be inclined to donate to 2 year old’s who have gone blind from RA-related uveitis, 20 year old’s who are losing their hair and who have damaged organs, 15 year old’s purchasing a new wheelchair after losing the ability to walk, 30 year old’s struggling to afford monthly infusions of $3,000+ drugs. Does this sound like “arthritis” to you? I don’t think so.

     
  4. Arthritis is a condition. Autoimmune Arthritis is a disease. Believe it or not, there is a difference. Arthritis is a condition caused by wear and tear and is typically associated with aging. While OA can be extremely painful and disabling, Autoimmune Arthritis is a whole different ballpark of disabling.  Autoimmune Arthritis is caused by a malfunctioning immune system. It is a disease that cannot be treated with OTC medications alone or left untreated without serious damage, even death. 

     
  5. Patients Deserve Validation. We are not enduring infusions, injections, low dose chemotherapy medications, surgeries, and long term suffering because of a relatively benign condition; we are enduring these things to avoid the consequences of diseases that left untreated are often fatal. The fear of the C word should be the same fear one feels when they hear Autoimmune Arthritis. It is equally devastating and very much incurable.



Join World Autoimmune Arthritis Day, reblog this post, share it on your Facebook wall, share it with friends and family members, make a donation or buy a bracelet, be the change you wish to see and demand better health care.
Take the pledge: 

I am important
My health is important
This disease is important
And as my disease is invisible and misunderstood to nearly all that I know,
It is my responsibility to help bring it to light.


    • #Rheumatoid Arthritis
    • #Arthritis
    • #Autoimmune Arthritis
    • #Lupus
    • #SLE
    • #Ankylosing Spondylitis
    • #Still's Disease
    • #Juvenile Arthritis
    • #JIA
    • #JRA
    • #Juvenile Rheumatoid arthritis
    • #Reactive arthritis
    • #Chronic illness
    • #Autoimmune
    • #Health
    • #Medicine
    • #Chronic pain
    • #World Autoimmune Arthritis Day
    • #WAAD
  • 1 year ago
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World Autoimmune Arthritis Day: May 20th, 2012

Thanks to the  always inspiring International Autoimmune Arthritis Movement, those of us with Autoimmune Arthritis now have a day to spread awareness.

In October, we rallied up for World Arthritis Day. Blue was the color; Osteoarthritis the focus. While there is nothing wrong with fighting OA and wearing blue proudly, we were stuck underneath that umbrella as per usual.

But not this year. This day, we’re putting our umbrellas away rain or shine. Our colors are blue and purple, and we will make them seen.

   

What is World Autoimmune Arthritis Day?

  • A 47-hour ONLINE international awareness event


What events are being held?

  • Online presentations hosted by Autoimmune Arthritis community leaders and activists

  • Interact with presenters and chat in groups with others participating

  • Participate in polls and surveys, which help various organizations help patients

  • Participate in WAAM’s Call to Action awareness posts

  • Visit vendor booths— awareness gear: bracelets, pins, shirts, you name it. Yours truly and her bracelets will be there ;)

How do I get information and get involved?

  • To participate in these events, register for free here online.

  • Why register? Registering allows you to receive notification of the official WAAD schedule, programs, organizations that will be involved, vendor discounts, and a chance to submit your story to be featured during the day!

  • Simple: just include your name, email, and type of Autoimmune Arthritis— nothing more!

What diseases fall under the AA name?

  • Lupus, Rheumatoid Arthritis, Juvenile Arthritis (JI/RA), Still’s Disease, Psoriatic Arthritis, Sjogren’s Syndrome, Ankylosing Spondylitis, and Undifferentiated/Mixed Connected Tissue Disease

Band together for Autoimmune Arthritis,

                                     

    • #World Autoimmune Arthritis Day
    • #WAAD
    • #International Autoimmune Arthrits Movement
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #Lupus
    • #SLE
    • #PsA
    • #Psoriatic arthritis
    • #Sjogren's syndrome
    • #Ankylosing Spondylitis
    • #UCTD
    • #MCTD
    • #Autoimmune
    • #Awareness
    • #Health
    • #Medicine
    • #Queue
  • 1 year ago
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News Rheum

It’s been a busy month for all things rheumatic/autoimmune diseases.

For those that haven’t heard, March is Autoimmune Diseases Awareness Month, started by the American Autoimmune Related Diseases Foundation. Click on the link to find an Autoimmune Disease Awareness walk near you or get involved.

With the spotlight on autoimmunity this month, celebrity Nick Cannon has generated some much needed awareness and attention for Lupus and despite his very recent diagnosis, is already working with the Lupus Foundation of America. You can read about his ordeal here or follow his or the LFA’s twitter for quick updates.

A new breakthrough medication that “blindfolds” white blood cells from causing damage seems to be promising for Rheumatoid Arthritis/Rheumatoid Autoimmune Disease patients.

Though most RA/D patients already know the serious increased risk of cardiovascular disease and complications that come with their autoimmune disease, a new study and set of statistics are out: RA/D patientshave a 40% increased risk of atrial fibrillation and a 30% increased risk of stroke. Another reminder of why it is imperative for those of us with autoimmune arthritis to keep our hearts healthy.

Also new on the RA/D front, Airway Abnormalities May Represent Preclinical Rheumatoid Arthritis. Author Bruce Jancin of Rheumatology News reports “increasing evidence [suggesting] that RA is smoldering in the lungs during this preclinical stage, which can last a decade or more.” The article goes on to discuss the role of Methotrexate as a preventative agent and the significance of the findings.

News Rheum Action: Looking for some easy ways to get involved?

Consider taking the Rheumatoid Patient Foundation’s RA/D Survey, which will help the new organization better help patients in the community.

Registration for the very first World Autoimmune Arthritis Day has begun. WAAD will be held on May 20th, 2012 as an international online awareness event. Registering and participating in the event allows you vendor discounts, a chance to submit your story, and much more. Get involved!

                     

    • #News Rheum
    • #Rheumatology
    • #Lupus
    • #SLE
    • #DLE
    • #Autoimmune
    • #AARD
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #Science
    • #Health
    • #Medicine
    • #Rheumatoid Lung Disease
    • #News
    • #Research
    • #Nick Cannon
    • #Autoimmune Arthritis
    • #World Autoimmune Arthritis Day
  • 1 year ago
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Avatar A 21 year old student and ePatient advocate working to help others navigate through life with chronic pain, chronic disease, and disability. Sharing resources, advice, helping others find a voice and become empowered patient advocates. Raising awareness for Autoimmune Arthritis and Autoinflamatory diseases.

Read more about Chronic Curve here.

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