RA Blog Week 2018: Day 4, Research…

I’m proud to be a part of the 4th annual RA blog week.  RAblog_week_RABADGE2018(2)Today’s prompt:  ResearchDo you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced to using research about Rheumatic Disease.

I’m the cofounder of the International Foundation for Autoimmune & Autoinflammatory Arthritis. We are a group founded by patients and use our voices to identify and solve the most pressing community problems affecting education, advocacy, and research.  Our focus on research came about because we, as patients, felt that the patient’s role in the research process was too passive.  Researchers work very hard to develop drugs that help people manage and cure illness, but often the symptoms they are targeting for improvement are not always the symptoms that patients feel most bogged down by.  For example, drugs are developed to control pain or reduce swelling, but make us tired.  When you are already struggling with fatigue as a part of your daily life, additional fatigue caused by medication can be BRUTAL. Wouldn’t it be amazing for researchers to actually hear what impacts patients the most.  I recently had a reaction to my biologic drug injection. It wasn’t a severe reaction, but it causes an all over feelings of myalgia that when compounded with my regular pain.  Sometimes….the treatment is more difficult to manage than the disease itself. We inject ourselves with these expensive drugs and pray for the best.  The side effects can be frightening, but we pray the research has proven the drug safe enough to get us through another day.

40033450_1096761443805624_4321368000407011328_nIFAA has pushed for research in the areas of Early Detection and Diagnosis, Disease Management, Patient-Research Collaboration, Precision Medicine Preparation, and New Stakeholder Guidance. We at IFAA are patients and our voices drive what we do – not only as a story to enhance our work, but also as the reason why we choose our initiatives in the area of research.  To learn more about what we do in the area of research, please visit https://www.aiarthritis.org/research.  Join us as a part of our ACT II Hub that will be rolling out in the near future.

Research is necessary to help patients live their best lives.  The inclusion of the patient voice in the research allows the process to be more authentic an reflective of the patient needs.

Check out other #RABlogWeek2018 blogs on research here: http://radiabetes.com/blog-week18/day4.html

 

2018 RABlog Week Banner

Posted by

Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

4 thoughts on “RA Blog Week 2018: Day 4, Research…

    1. Tiffany has really been spear heading a lot of patient-centered research and a community approach. Our other cofounder also participates in PCORI. They are much more focused on the research component. I’m very proud of their work.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s