- A patient advocate/health activist/ePatient is a patient who uses social media and technology to facilitate the role of patient participation and engagement in medicine.
- Chronic Curve is a website and community run by patient advocate Emily Bradley. Chronic Curve works to empower, advocate, and educate others about chronic pain, chronic autoimmune/autoinflammatory diseases, and disability.
- By sharing experiences, sharing resources, creating a community page for patients to connect with others, I use social media to shine a light on major issues faced by patients and their loved ones: a lack of appropriate pain management; the stigma of chronic pain, invisible illness; learning to live at a “new normal;” college and chronic disease; improving the doctor-patient relationship, and much more.
Why a donation button?
- Advocacy work does not pay patient advocates in dollars. And it shouldn’t. The money patient advocates work hard to raise goes to funding for research, treatments, and a cure. Though I will continue to work for a currency that has different value (a more important one!) than that of a dollar bill, I am a full time student, disabled, and a full time patient with six chronic conditions. Money donated through the donate button will go to site-related costs, the costs to continue ordering customized bracelets, and any expenses concerning conferences/speaking events. Your donation will help me continue to help others.
What do you have?
As of now:
- Scoliosis for 10+ years— full surgical spinal fusion (2002); a revision surgery (September 2011) to remove rods and solve chronic pain
- Still’s Disease
- Unspecified Autoinflammatory Disease, Periodic Fever Syndrome
- Chronic migraine headaches; retinal migraines
What does Seronegative mean?
- Seronegative means one has the clinical findings of an autoimmune disease, but blood work produces none of the autoantibodies found in people with x disease. This can change for many seronegative patients over time.
How do I join the Chronic Curve community or similar communities?
- Like/subscribe to the Chronic Curve community facebook page for updates, discussions with other patients, and much more
- You can find Chronic Curve on twitter and follow the #rheum or #spoonie communities
I think I have ____. Can you tell me if it sounds like I have ___?
- Please read the disclaimer. I am not a doctor. Any health advice posted is what I have encountered through my own journey. Everyone has a different experience— medical advice and diagnoses should be solicited from a physician.
Can I submit to Chronic Curve?
- You may! Please submit any and all feedback, questions, or criticisms to the facebook page, inbox, or email.
Do you have an e-mail?
Are you compensated for your product and book reviews?
- No. Anything I review I have either read or used myself. If I am sent a product for review, a disclaimer will be posted notifying readers
- All opinions any donated products are my own and not influenced by any kind of compensation.