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Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.
Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!
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Come chat with me TOMORROW at 10am EST about self Esteem and Autoimmune Arthritis. Whether you have Lupus or IBD-related arthritis, let’s talk all things self love, self care, self esteem with disease, disability, scars, prednisone side effects, etc.

Come connect with other patients, share resources, ideas, and chat about a sensitive topic in a safe space!

    • #the amount of typos in this thing annoys me so much
    • #Chronic illness
    • #Chronic pain
    • #Autoimmune
    • #WAAD
    • #Rheumatology
    • #Medicine
    • #Health
    • #Arthritis
    • #RA
    • #JRA
    • #JIA
    • #sJIA
    • #JA
    • #Reactive Arthritis
    • #Rheumatoid Arthritis
    • #Lupus
    • #SLE
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Sjogren's syndrome
    • #Ankylosing Spondylitis
    • #Live chat
    • #Disability
    • #Autoinflammatory
    • #Dermatomyositis
  • 5 days ago
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New Biologic Approved by the FDA for sJIA, Still's Disease!

A biologic called Ilaris, an Interleukin-1 (IL-1) beta inhibitor, has been approved for Systemic Juvenile Arthritis, Still’s Disease. Ilaris is already approved to treat other similar autoinflammatory diseases, such as CAPS (cryopyrin-associated period syndromes).

For those of us whose diseases best respond to IL-1 drugs (Kineret), it’s great to have another option on the market for us now and hopefully will make it easier for insurance to cover the medication (no more off-label use). A good day for JIA!

Click to read more.

    • #Autoimmune
    • #Medicine
    • #Health
    • #Rheumatology
    • #sJIA
    • #JIA
    • #JRA
    • #Rheumatoid Arthritis
    • #RA
    • #Still's Disease
    • #Arthritis
    • #Autoimmune Arthritis
    • #Biologics
    • #Ilaris
    • #IL-1
    • #Chronic illness
    • #Chronic pain
    • #Juvenile arthritis
    • #Juvenile idiopathic arthritis
    • #Systemic juvenile idiopathic arthritis
  • 1 week ago
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Memorial for Laura Kenyon, author of Still’s Life— May 10th, 2013

For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time. 

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially. 

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy. 

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?

    • #Chronic illness
    • #Chronic pain
    • #Laura Kenyon
    • #Autoimmune
    • #Still's Disease
    • #Rheumatology
    • #medicine
    • #RA
    • #JRA
    • #JIA
    • #Arthritis
    • #Autoimmune Arthritis
    • #Lupus
    • #SLE
    • #Rheumatoid Arthritis
    • #Ankylosing Spondylitis
    • #Dermatomyositis
    • #PCOS
    • #Chronic migraine
    • #IBD
    • #Crohn's
    • #Ulcerative colitis
    • #Stem cell transplant
    • #MCTD
    • #UCTD
    • #Fibromyalgia
    • #Psoriatic arthritis
    • #Memorial
    • #Disability
    • #Health
  • 2 weeks ago
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World Autoimmune Arthritis Day 2013: Free Registration! Spread Awareness and Participate from Home!

It’s time! The second annual World Autoimmune Arthritis Day (WAAD) will be held on May 20th, 2013!


Hosted by the International Autoimmune Arthritis Movement, this year is going to be bigger and better than before— 3x the size of the 2012 event! Join those of us at IAAM and WAAD to shine a light on Autoimmune Arthritis!

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What is WAAD?

  • WAAD is a 47-hour, global time zone, virtual awareness convention where patients, patient experts, health care professionals, nonprofit organizations, loved ones, and supporters to come together to spread awareness and education of Autoimmune Arthritis. 


How do I get involved?

On the day of the event, log on and explore!

  • Live Chats held by ePatient experts-- watch and participate in live chats on a variety of topics. Yours truly will be hosting a presentation and live chat on self esteem/self love, so make sure you stop by and chat with me!

  • Presentations by patient experts on a variety of topics, all dedicated to aiding the Autoimmune Arthritis patient.
  • Vendor booths

  • Resource Library with hundreds of patient resources and a blog list for Autoimmune Arthritis patients and their loved ones

  • Ask the Experts Panel-- connect with health care professionals and submit your questions

  • Patient Nominated Best of the Best Rheumatologists— a list compiled by patients of the best rheumatologists. Looking for a new rheumy? Stop by and check out the list. Nominate YOUR rheumatologist here!
  • 36 nonprofit organizations will be holding booths from all over the world, from South Africa to New Zealand!

  • The Lounge— an open chat to connect with other WAAD attendees and Autoimmune Arthritis patients.

  • Check out the WAAD Android Apple app: A Day in the Life With Autoimmune Arthritis (!)

  • Enter the WAAD2013 Raffle and much more



What is Autoimmune Arthritis?

  • Autoimmune Arthritis encompasses: Rheumatoid Arthritis, Juvenile (autoimmune) Arthritis (JIA/JRA), Still’s Disease, Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, Lupus, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogren’s Syndrome, and more.

  • Read more about types of Autoimmune Arthritis and other related conditions (e.g., Vasculitis, Inflammatory Bowel Disease).



How do I sign up?

  • Easy! Registration is completely free. Submit your name, email, and a few pieces of relevant information here.

We want to see YOU there! Reblog, retweet, follow along on Twitter, and spread the word! Will you be attending WAAD 2013?

    • #Chronic illness
    • #Chronic pain
    • #WAAD
    • #Arthritis
    • #Medicine
    • #Health
    • #Rheumatology
    • #Disability
    • #Rheumatoid Arthritis
    • #Autoimmune
    • #RA
    • #JRA
    • #JIA
    • #JA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Lupus
    • #SLE
    • #Ankylosing Spondylitis
    • #Psoriatic Arthritis
    • #Juvenile Arthritis
    • #Sjogren's Syndrome
    • #Lyme
    • #Vasculitis
    • #IBD
    • #Crohn's
    • #Ulcerative Colitis
    • #Awareness event
    • #Fibro
  • 2 weeks ago
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Dr. Oz and Autoimmune Arthritis Part I: Diet and Supplements are NOT a Cure.

Earlier in the year, the Dr. Oz show profiled the mother of a son diagnosed with JIA who sought out alternative medicine to treat his disease, eventually leading to a diagnosis of Leaky Gut Syndrome.  Susannah Meadows was asked to participate in the Dr. Oz show after a New York Times article, entitled The Boy With a Thorn in His Joints, was published about their story. 

In true Dr. Oz alarmist fashion, the promo for this episode introduced the topic with: “Why do doctors hate this woman?” and “When traditional medicine fails, does alternative medicine hold the cure?” 

Meadows sought out alternative medicine as primary treatment for her son, using dietary restrictions and supplements. The treatment regimen?

  • No sugar, dairy, gluten. No potatoes or tomatoes
  • Daily probiotics
  • High doses of Omega-3’s
  • Cherry juice
  • An “ancient Chinese herbal concoction“ 


Doctors proposed this natural treatment alongside his modern medication, Methotrexate, for 6 weeks. He got worse before he got better, but at the end of the 6 weeks, the little boy was “cured.” At the time of the episode, the little boy had no pain and was on no medication. Meadows attributes his “cure” to the diets and supplements, despite his “cure” occurring after 6 weeks of Methotrexate.

I have a real problem with this. Not because of how Mrs. Meadows decided to treat her son, but how Dr. Oz Show used her story to create a link between JIA and Leaky Gut Syndrome, and push the idea that alternative medicine is a cure. To suggest that Autoimmune Arthritis can be cured with diet and supplements, especially when her son was on Methotrexate and achieved remission, is an egregious mistake.  How can Dr. Oz suggest modern medicine indeed failed when Mrs. Meadows’s son was on this modern medicine when he reached remission! 

If diet and supplements were a cure, we would not need biologics. I know many others who are following similar strict alternative treatments (myself included). They still have an incurable type of Autoimmune Arthritis. Her son still has JIA; he is in remission. Remission is not a cure.

Dr. Oz emphasizes the seriousness of “big gun” Methotrexate: the risks and side effects as a chemotherapeutic medication. However, he does not discuss the dosing of Methotrexate: Autoimmune patients inject (or take MTX orally) once a week at much lower doses than cancer patients. Though there are risks, Methotrexate is the go-to treatment for JIA/JRA/RA. Dr. Oz also failed to mention that patients who take Methotrexate are monitored regularly. Not surprising, considering that Dr. Oz is a cardiologist. Whether or not he is qualified to be linking Autoimmune Arthritis to Leaky Gut or making comments about Methotrexate use in autoimmune patients is up to you to decide.

Worse, Dr. Oz failed to emphasize the seriousness of Juvenile Idiopathic Arthritis at all! In fact, he fails to recognize that it is even a systemic autoimmune disease! There was no discussion about what an autoimmune disease is. There was ZERO discussion about things like disease outcome, rheumatoid factor, how to test for JIA, or the concept of remission. There was ZERO discussion of biologic medications.

Dr. Oz so elegantly paints the picture of this disease (which, at this point, is unclear: are we talking about JIA, or are we saying that JIA = Leaky Gut Syndrome? I’ll let you watch the clips and decide whether or not either condition is discussed appropriately). 


If you’ve got weeds growing in your back yard, which is how we as doctors think about these illnesses, these symptoms, theoretically you’d want to pour pesticides on it. But pesticide’s toxic […] I really think there are opportunities for us to focus in on why those weeds are growing. Stop fertilizing the weeds, you don’t need pesticides to kill ‘em”

Dr. Oz has a great point: there are opportunities to find out why these weeds (autoimmune diseases) are popping up. But leaky gut is not synonymous with Juvenile Idiopathic/Rheumatoid Arthritis. Not only does this idea harm Autoimmune Arthritis/JIA patients, but an entire spectrum of people with other autoimmune diseases (i.e., Crohn’s, Ulcerative Colitis, IBD, Endometriosis).

They then bring in a GASTROENTEROLOGIST. If you’re going to do a show on Juvenile Idiopathic (Rheumatoid) Arthritis, you better bring in a rheumatologist. We already know that the earlier JIA is treated with aggressive medication, the faster and more likely children can reach remission. We already know that the risk of aggressive treatment is likely less than the risk of untreated JIA (Edward Giannini, MD). Of course, none of these scientific findings are discussed.

Dr. Oz’s tendency to delve into the world of pseudoscience and alarmist claims has earned him much criticism from fellow physicians and scientists. But how many of his viewers are science minded and know what to look for in a clinical study? How many of his viewers are empowered patients? No one should be taking medical advice from a daytime television doctor, but for viewers who may be feeling lost in their own path to a diagnosis or parents of sick children, it can be easy to fall into the trap.

For parents of children newly diagnosed with JIA or similar types of Autoimmune Arthritis, Dr. Oz has created so much confusion. Does my child really have Leaky Gut Syndrome? Diet and supplements, we can do that instead of the medications! 

Confusion, incomplete and poor information (not to mention pseudo science) is downright dangerous. To take a child with an aggressive disease off of medication that can potentially halt irreversible damage is dangerous. 

How sad is it to think that parents of newly diagnosed children who watch this episode may choose to abstain from appropriate treatment in hopes of a medical miracle cure that does not exist?

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    • #Chronic illness
    • #Chronic pain
    • #Disability
    • #Autoimmune
    • #Arthritis
    • #Autoimmune Arthritis
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #Still's Disease
    • #MCTD
    • #UCTD
    • #Lupus
    • #SLE
    • #Ankylosing Spondylitis
    • #Alternative medicine
    • #Health
    • #Medicine
    • #Rheumatology
    • #Methotrexate
    • #Dr. Oz
    • #Crohn's
    • #Ulcerative Colitis
    • #IBD
    • #Leaky Gut Syndrome
    • #Advocacy
  • 2 months ago
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Congrats to Lene Andersen (The Seated View) on her New Book: Your Life with Rheumatoid Arthritis

A huge congrats to Lene Andersen of The Seated View on her new book,Your Life With Rheumatoid Arthritis!

If you are not already familiar with Lene, her excellent blog, and contributions to our Autoimmune Arthritis and disability communities, please go check out her work. She is a lead writer at MyRACentral.com, and a director of community outreach at of Show Us Your Hands: An Inflammatory Arthritis Project.

Your Life with Rheumatoid Arthritis is about making that life easier:

Because having RA is about so much more than a physical disease[…] When you have RA, your whole life has RA […]

What if there was a book that talked about all the things involved in your life with RA and helped make them easier? What if there was a sort of guide book to living well with this disease? And what if it wasn’t just for those who are new to RA, but also a resource for people who have lived with it for years?

For more information about Your Life with Rheumatoid Arthritis, Lene Andersen, and where you can purchase this book:

  • The Seated View’s post about YLWRA
  • Yourlifewithra.com

 

I will be purchasing and reviewing Lene’s book shortly, but I urge anyone with Rheumatoid, Autoimmune, or Inflammatory Arthritis to go check out her work and her book.

Another great resources for Autoimmune Arthritis patients!

    • #Chronic illness
    • #Chronic pain
    • #Rheumatoid Arthritis
    • #RA
    • #JRA
    • #JIA
    • #JA
    • #Arthritis
    • #Autoimmune Arthritis
    • #Lupus
    • #SLE
    • #ankylosing spondylitis
    • #MCTD
    • #UCTD
    • #Your Life With RA
    • #Lene Andersen
    • #Disability
    • #Rheumatology
    • #Medicine
    • #Health
    • #Book review
    • #sJIA
    • #Still's Disease
    • #Autoimmune
    • #Autoinflammatory
  • 3 months 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.

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