Biography of Kelly Young with regard to Rheumatoid Arthritis / Rheumatoid Disease.
Kelly’s life has been greatly impacted by the disease commonly called Rheumatoid Arthritis (RA). Her grandfather died prematurely as a result of RA, as did his grandmother. From age thirteen, Kelly experienced periodic RA symptoms, but was unable to obtain a diagnosis because adequate means did not exist to test for early RA. In 2006, annoying periodic flares became full-blown rheumatoid disease, abruptly changing her life, and suddenly ending an active lifestyle.
She says the day before RA she could do fifty push-ups, and suddenly, she could not pick up her own purse. She had spent her life caring for others, but from that day on would need assistance with most things. The disease quickly spread, affecting every joint in her body, making it difficult or impossible to do many things she loves, including sports, arts, and cooking.
When her doctors did not make a diagnosis, Kelly did a lot of reading online about what can cause fevers, symmetrical joint pain and weakness with rashes, flushing and loss of appetite. Eventually, a podiatrist recognized the symmetrical pattern of inflammation in her feet and suspected RA. When she finally saw a rheumatologist, the tell-tale antibodies were very high. However, Kelly was not dramatically swollen that day and he did not think she looked sick. Although he agreed that she had RA, he did not believe it was very active. The doctor did not know how to measure disease activity and she left untreated.
At this point, Kelly had difficulty walking or holding her baby. She changed insurance in order see another rheumatologist who aggressively treated her with methotrexate and weekly Humira for the next 2.5 years. However, the rheumatologist repeatedly expressed bewilderment that Kelly’s symptoms continued in spite of treatment. The doctor repeatedly said that most people get better with treatment. Although, the RA was progressing to affect eyes, vocal cords, and cervical spine, the doctor did not know how to evaluate it without conspicuous external swelling in the hands.
Eventually, Kelly determined to further educate herself about RA. She started reading medical journals as well as what patients were saying about their experiences with RA. She was struck by the inconsistencies between sources. There was not a source with comprehensive current information about RA. Most websites described a version of RA that was different than what patients say they experience.
So, Kelly determined to create a website to address that need. She bought a new computer and started writing.
That was early in 2009. Since then, Kelly learned technology for website development and social media in order to build rawarrior.com as it is today, with over 900 pages of news articles, editorials, and practical tools to help patients and caregivers better understand and manage RA. Her goal is to make essential information more accessible to patients, while encouraging them to fight this devastating disease.
RA Warrior has become a thriving community with a presence in many areas of social media. Hundreds of people connect via the #Rheum community she founded on Twitter. Her Facebook group has been recognized as one of the largest busiest health-related communities online with about 54,000 members. Her YouTube video blogs have had tens of thousands of views.
Kelly’s experiences have enabled her to add compassion and humor to the accuracy of her writing. She strives to present an accurate presentation of the RA patient experience to increase understanding of the rheumatoid disease process, encourage better research, and ultimately improve care because she realized that patient input was the only way that the RA puzzle would one day be solved. She’s had contact with tens of thousands of patients and continues to learn daily from their input.
Being a patient reporter has afforded Kelly a unique vantage point with regard to the RA patient journey. She has worked to build beneficial relationships between medical, research, and patient communities. She was the first patient to begin attending American College of Rheumatology Annual Scientific Meetings and the ACR Within Our Reach Investigator’s Meeting with cutting edge research on RA.
Through RA Patient Insights, LLC, Kelly shares the RA patient journey through consulting, speaking, and writing on rheumatology topics. She has contributed a patient viewpoint in health communications by reviewing CME, editing articles for medical professionals, social media leadership and coaching, evaluating scripts for pharmaceutical companies’ health websites and programs for patients. She has partnered with industry in ways which benefit patients by increasing patients’ access to information and creating ways for rheumatology patients to have a greater voice in different aspects of the healthcare industry.
In 2011, Kelly established the 501(c)3 non-profit Rheumatoid Patient Foundation (RPF) with the sole purpose of improving the lives of people living with Rheumatoid disease. She has already successfully established relationships with key opinion leaders; recruited and trained volunteers; conveyed the message of the foundation in writing and interviews; successfully obtained grants; and created educational material. The RPF first exhibited at the American College of Rheumatology Scientific Meeting in 2011, presenting a video The Faces of Rheumatoid Disease.
RA is not a rare disease; Mayo Clinic’s research says the lifetime risk of RA is 3.6% for women. Yet lack of recognition of it often leads to delayed diagnosis and inadequate medical care. Patients struggle to receive appropriate social and work accommodations, and proper insurance or disability coverage. Kelly works to increase awareness of RA because not only are the needs of RA patients unmet, the needs are often unidentified. Patients sometimes say that the constant severe pain of RA is too much. Almost daily, she tells someone not to give up trying to get a doctor to understand how the disease is affecting them.
Kelly supports the work of other patient writers and contributes to organizations that are patient-centered such as the Society for Participatory Medicine, WEGO Health, Health Central, and the Mayo Clinic Social Media Health Network. She serves on the Advisory Board for the Mayo Clinic Center for Social Media, producing content, providing advice, and making connections that benefit the members.
She agrees with pioneers such as Dr. Ted Pincus that RA patients are usually more able to inform their doctors about their disease activity than vice versa, whether they experience fevers, fatigue, stiffness, weakness, or other changes in their joints. They know whether their eyes are sore or they have trouble breathing, etc., issues which are not covered in most rheumatological visits. However, communicating these complex factors is extremely challenging, so Kelly supports the use of patient outcome measures and further research to create more reliable disease activity instruments.
Kelly is also a mother of five who has successfully home-schooled all of her children. They have earned awards and academic scholarships, with one recently graduating summa cum laude. RA prevented Kelly from continuing activities such as hiking, gourmet cooking, gardening, furniture refinishing, and athletics, making the impact of RA on her and her family something far beyond what most doctors realize. It has been a continuing challenge to attain needed treatments for this extremely complex disease.
Kelly lives every moment a fair amount of pain and has daily fevers and frequent loss of voice. She is among the thirty-four percent of RA patients who are non-responders to currently available treatments. She recently completed a clinical trial, and fights every day to get as much of her life back as possible. Kelly brings not only an intimate knowledge of living with unrelenting rheumatoid disease, relating with physicians and the health care system, but also the unique vantage point about the disease as a result of interacting with tens of thousands of patients.