e-patient Archives | Page 2 of 4 | Rheumatoid Arthritis Warrior

Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

October 27, 2012May 14, 2018 Kelly Young 5 Comments e-patient, Patient advocacy, Patient reported outcome measure, PCORI

Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area! Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve...Continue reading 5 Comments » Read more

We’re Warriors So Fighting On Is Just What We Do

October 19, 2012May 14, 2018 Kelly Young 14 Comments e-patient, Patient advocacy, PCORI, Rheumatoid Arthritis awareness, Rheumatoid Patient Foundation

August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November. And, then the hard drive...Continue reading 14 Comments » Read more

The Powerful Health Care Role No One Really Wants: Being a Patient

June 30, 2012May 14, 2018 Kelly Young 17 Comments e-patient, Patient advocacy, Rheumatoid Arthritis awareness

The valuable knowledge of patients with diseases like RA Today, Katie Beth and I flew home from San Francisco where I spoke three times this week: There was a presentation about the value of patient input with chronic conditions like rheumatoid disease, a panel discussion about e-patients and e-docs at Digital Pharma West, and an informal address...Continue reading 17 Comments » Read more

Mondini Syndrome Is Just Deafness Like RA Is Just Arthritis. Not.

May 31, 2012May 14, 2018 Kelly Young 21 Comments e-patient, Living with chronic illness like RA, Parenting with RA

I was home for 3 hours today in between doctor appointments for my Tiger and I spent that time reading up on his diagnoses. As I drove him to 3 doctors in 2 days, thoughts swirled around and I decided to share some of it with you. This is not about RA, but there are...Continue reading 21 Comments » Read more

Kelly Young Wins WebMD Health Hero Award

November 13, 2011May 15, 2018 Kelly Young 49 Comments e-patient, Patient advocacy, Rheum Disease in the Media, Rheumatoid Patient Foundation

WebMD magazine chooses Kelly as 1 of 4 “Champions of Care”! Look what I found on my dresser when we got home from Chicago last night! The new WebMD magazine with yours truly in it! You can click on the images to enlarge and read the text or read the story on the WebMD Health Hero honorees...Continue reading 49 Comments » Read more

The Path of Mercy in Medicine: A Tale of Two Doctors

September 28, 2011May 15, 2018 Kelly Young 12 Comments e-patient, Patient advocacy, Talking to doctors

Physicians enjoy a unique position in our society with unique opportunities to make a difference in others’ lives. With that powerful role, they can choose between a path of mercy and a path of nonchalance. They can be a tool in the hands of God or they can just be a tool. There was the woman...Continue reading 12 Comments » Read more

News Flare! 1st Rituxan Infusion! WebMD Award! and More!

September 15, 2011May 15, 2018 Kelly Young 35 Comments e-patient, Patient advocacy, Professional patient, Rituxan for Rheumatoid Arthritis

First Rituxan infusion Monday, I spent 8 hours with an IV for my first Rituxan infusion. It took a longer time for various reasons, but it seems I did fine. So far my only noticeable side effect has been a fierce headache. Still. It’s difficult to describe how grateful I am for those who sat with me...Continue reading 35 Comments » Read more

Without e-Patient Input, an ER Experience Can Be Empty

May 28, 2011May 15, 2018 Kelly Young 52 Comments e-patient, Living with chronic illness like RA, Rheumatoid arthritis pain

Things that patients know about their health and the wealth of information they find online make input from patients valuable and meaningful. These patients are called e-patients. An e-patient acronym: Expand Participation by Allowing The Input of Evidence Not in Textbooks Hopefully, you didn’t miss the exciting news for rheumatology e-patients acknowledging that by “pooling our knowledge and...Continue reading 52 Comments » Read more

A Spoonful of Sugar from the Lab of Professor Rebecca Bader

April 19, 2011May 15, 2018 Kelly Young 6 Comments e-patient, Research on Rheumatoid Arthritis, Talking to doctors

Katie Beth and I were on the road again this past week! We drove down to a Disney convention center to see the castles and other fantastic things like dreams come true… Mission of Bader Research Laboratory Rebecca Bader, Assistant Professor of Biomedical & Chemical Engineering at the Syracuse Biomaterials Institute of Syracuse University and her staff are...Continue reading 6 Comments » Read more

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