Tag Archives: patient advocacy

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

As part of our vetting process for Arthritis 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.

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

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Alayna Travaglione: Her Dreams of Studying Abroad Came True

Studying abroad can be an exciting but nerve-wracking experience. The comfort zones you are so used to back home become non-existent as you make your way through an unknown country meeting new people and immersing yourself into different cultures. For a college student with Rheumatoid 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 my medications? 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 reading Alayna 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 reviewed Arthritis 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 with juvenile 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 7th period 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 with fibromyalgia when she was 26, though her chronic pain goes 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 reading JA 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 for Arthritis 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 with psoriatic 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 reading Nurse With Psoriatic Arthritis: “Take Care of Yourself”

kathy geller patient story

Rethinking Life With Severe Osteoarthritis

As part of our vetting process for Arthritis 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 degenerative osteoarthritis (OA) and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue reading Rethinking Life With Severe Osteoarthritis

liz morasso patient story

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

As part of our vetting process for Arthritis 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 has volunteered for the Arthritis Foundation since 2002. That’s when, at age 16, she was diagnosed with systemic lupus erythematosus (SLE) and rheumatoid 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 reading Liz 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 for Arthritis 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 with rheumatoid arthritis (RA) and how the statistics she reviewed in Arthritis by the Numbers relate to her personally.

Continue reading Patient Partner’s Words of Wisdom About Living With RA