Kelly Young, the inspiring author of RA Warrior and founder and patient advocate for the Rheumatoid Patient Foundation (RPF) asked me as a Rheumatoid Arthritis (RA) blogger to get the word out that RPF has established the first-ever Rheumatoid Arthritis Awareness Day for this coming Saturday, February 2nd, 2013! I thought I’d share my experiences living with Rheumatoid Arthritis in case it helps another patient on their journey.
Kelly and the RPF have been working hard to raise awareness of how the chronic illness of Rheumatoid Arthritis differs from the more commonly known type of osteoarthritis. With awareness and education of the differences, patients of RA, or rheumatoid disease, will have better access to “disability accommodations, clinical care, healthcare reimbursement and research funding”. Critical components of care we may not want but will eventually need just to get by.
I kindly request that you read my story and share RPF’s press release on your blog or other social media. It takes a few seconds to share the information, you never know who you may be helping by spreading the word. A newly diagnosed patient who feels scared and alone, not knowing how this disease will impact them. A mother of a child with Juvenile Rheuamtoid Arthritis who watches her child experience physical pain and fatigue that prevents the child from running, jumping and playing like other kids. A bed-bound patient who is in too much pain to be able to get out of bed and take care of themselves. Together we can raise awareness of Rheumatoid Arthritis, an “invisble illness” in its appearance but very debilitating to the patient and those who love them and watch helplessly.
How Does It Feel to Have RA?
How does it feel to not be able to run without pain and play sports with my kids? How does it feel to not be able to lace my fingers between my husband’s when we hold hands? How does it feel when I have surgery on my right foot and can’t walk with my baby in my arms? How does it feel needing surgery on my right hand because my tendons slipped out of place just trying to buckle my wriggly son into his car seat? How does it feel to walk down the hall at work in tears and have an elderly woman ask me if I am ok and if she can help me?
It hurts. Emotionally and physically.
What Can I Do?
I can stay positive, focus on what I can do and who I can help. I can adore and take care of my kids and husband to the best of my ability. I can not let RA defeat my spirit. I can help raise awareness in the hopes that one day a cure is found. I can educate others on how it feels, give a glimpse of all the ways RA impacts me so that researchers and doctors can figure out how to help so many others like me. I can support the RPF in their endeavor to raise awareness. I can help fight this disease, can’t you help me too?
What Can You Do?
1. Read the press release copied below or at Rheumatoid Patient Foundation’s website.
2. Find more ways on how you can help raise awareness leading up to and on Rheumatoid Arthritis Awareness Day, February 2nd.
3. Share my blog post on your social media platforms using the buttons at the bottom of the post or via email.
Thanks for taking the time to read and raise awareness for a cause near to our family.
RPF’s press release copied below (cause I REALLY want you to see it!):
FIRST AWARENESS DAY FOR RHEUMATOID ARTHRITIS ESTABLISHED BY RHEUMATOID PATIENT FOUNDATION
January 22, 2013 in Events, Exciting, Press Release
Patients Increase Public Awareness of Underestimated Disease
Rheumatoid Awareness Day
January 22, 2013 – Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.
February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. “Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow,” says Kelly Young, founder of the RPF. “It’s impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.”
Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare. Rheumatoid disease affects about one percent of the world’s population, with 1.6 to 2 million Americans currently diagnosed. Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men.
Rheumatoid Awareness Day comes at the start of Heart Disease Awareness month, underscoring a serious aspect of rheumatoid disease: heart involvement. Studies show that rheumatoid disease may affect the heart prior to diagnosis. Rheumatoid patients have higher incidence of stroke and atrial fibrillation in addition to the specific effects of the disease upon the heart itself. A study conducted by Mayo Clinic reported that rheumatoid arthritis patients were twice as likely to experience silent heart attacks and sudden cardiac deaths.
The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease. RPF encourages both the rheumatoid patient community and the public to get involved by sharing educational resources, promoting awareness messages via social media, participating in a live online chat and a matching donation opportunity. For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.
Rheumatoid Patient Foundation
RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow us on Facebook http://www.facebook.com/rheumatoidpatientfoundation or Twitter http://www.twitter.com/RheumPF.
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 Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf
 Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1
 Kerola, A et al. Annals of Rheumatic Diseases. 2012. Cardiovascular comorbidities antedating the diagnosis of rheumatoid arthritis. http://ard.bmj.com/content/early/2012/11/22/annrheumdis-2012-202398.abstract
 Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257
 Young, K. 2011. Rheumatoid Arthritis Warrior. 20 Facts About Rheumatoid Heart Disease. http://rawarrior.com/20-facts-about-rheumatoid-heart-disease/
 Science Daily. 2005. Mayo Clinic Finds Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death. http://www.sciencedaily.com/releases/2005/02/050204121639.htm