Tag Archives: patient advocacy

Patient Partner’s Words of Wisdom About Living With Gout & OA

As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how arthritis changes and challenges everyday living.

Meet Craig Buhr, who is challenged by gout and OA. Following, in his own words, are his thoughts about the statistics he reviewed in Arthritis by the Numbers – and how they relate to him personally.

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Alayna Travaglione: Her Dreams of Studying Abroad Came True

出国留学是一种令人兴奋但又伤脑筋的经历。当你穿越一个未知的国家,遇见新的人,沉浸在不同的文化中时,你在家乡所习惯的舒适区就不复存在了。For a college student withRheumatoid Arthritis, there are a few extra challenges I have to face and while doing so, I often question if choosing to travel for a semester was the best option for me. As someone who has Arthritis in all of their joints and still undergoing surgical procedures, the idea of being in an unfamiliar place away from my family and doctors was downright scary. What if my joints got worse or something happened with mymedications? What if I decide midway I can’t put my body through this anymore? These questions often swirl around in my head as the activities become difficult or the field trips become too strenuous that I am left lying in bed the next day. When I do ask myself these questions though, I reflect on why I chose to study abroad in the first place.Continue readingAlayna Travaglione: Her Dreams of Studying Abroad Came True

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JA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

Among patient partners who reviewedArthritis by the Numbers– a collection of verified arthritis facts and figures – was the Soler family of Georgia. Robin Soler has been active with the Arthritis Foundation ever since her younger daughter, Isabela, was diagnosed withjuvenile idiopathic arthritis (JIA). At the time she was one of the youngest children in the state to be diagnosed with JIA at just 12 months old.

Over the past 15 years, mother and daughter have seen about 50 different doctors and scores of other medical experts. Isabela has taken at least 20 different types of prescription drugs – consuming more than 15,000 pills in her lifetime, not including antibiotics and other normal childhood drugs. She has missed countless parties and playdates, and one recent semester had to skip 7thperiod 21 times for doctor’s appointments.

Isabela’s mother, Robin, is a developmental psychologist and senior scientist at the Centers for Disease Control and Prevention in Atlanta. Robin has had her own personal experience with arthritis, diagnosed withfibromyalgiawhen she was 26, though herchronic paingoes back to her mid-teens.

After reviewing arthritis statistics we’ve collected, Robin’s main takeaway: “I am happy to know there is information out there, but I’m concerned about the pictures the numbers paint for parents. We and our children need to be hopeful.”

Continue readingJA Mom: “I Know Just Enough to Know I Don’t Know Enough.”

Patient Story - Karen Lomas

Nurse With Psoriatic Arthritis: “Take Care of Yourself”

As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Karen Lomas, 65, who works full-time as a nurse. Following, in her own words, is Karen’s story about living withpsoriatic arthritis(PsA), which she was diagnosed with several years ago, and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.Continue readingNurse With Psoriatic Arthritis: “Take Care of Yourself”

kathy geller patient story

Rethinking Life With Severe Osteoarthritis

As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Kathy Geller, who touched many lives during the years she spent as an Arthritis Foundation exercise trainer and education program presenter – a role model for successful self-management. Following, in her own words, is Kathy’s story about living with severe degenerativeosteoarthritis (OA)and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

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liz morasso patient story

Liz Morasso: Support Networks Helped Her Adjust to a New Life

As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Liz Morasso, a licensed clinical social worker at UCLA’s department of radiation oncology who hasvolunteered for the Arthritis Foundationsince 2002. That’s when, at age 16, she was diagnosed withsystemic lupus erythematosus (SLE)andrheumatoid arthritis (RA). Over the years, she has immersed herself in leadership roles with the Foundation and speaks nationwide to inspire patients living with chronic illness.

Following, in her own words, is Liz’s story about living with these conditions and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.Continue readingLiz Morasso: Support Networks Helped Her Adjust to a New Life

eileen schneider patient story

Patient Partner’s Words of Wisdom About Living With RA

As part of our vetting process forArthritis by the Numbers– a collection of verified arthritis facts and figures – we invited patients to comment on the disease section that most affected their lives. After all, they are the experts on how the disease changes and challenges everyday living.

Meet Eileen Schneider, who is a registered nurse and has a passion for patient advocacy. Following, in her own words, is her story about living withrheumatoid arthritis (RA)and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue readingPatient Partner’s Words of Wisdom About Living With RA