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!
I had to take the week to chill out after some family stuff, and I came back to so many messages from people who found me through Tumblr Tuesday and hundreds of new followers.
You guys are awesome. I love getting to know who reads Chronic Curve and a little about why you do, so if you haven’t already, feel free to drop me a message and introduce yourself!
Major kudos to those of you who also sent me jokes. Tumblr is the greatest.
My inbox has over 370 messages (oops)— the goal for this summer is to answer every single one of them. I’ve read them all, I promise, and responses are coming!
Chroniccurve.com is still undergoing a facelift, so bear with any changes and a lack of proper navigation for a little while.
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.
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?
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!
What is WAAD?
How do I get involved?
On the day of the event, log on and explore!
What is Autoimmune Arthritis?
How do I sign up?
We want to see YOU there! Reblog, retweet, follow along on Twitter, and spread the word! Will you be attending WAAD 2013?
Since it’s 4am and pain is keeping me from sleeping, I’m going to be answering inbox questions for the next little while.
Now is a good time to submit if you need a quick response! You know, if you happen to be awake at weird hours like myself.
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.
loading photos…
