If you are going to stand on the shoulders of giants, it only seems fair that you should learn their names. History, however, transcends names in a textbook. A medical history is a chronicle of problem solving and an accumulated observational diary of patterns. Discovery by Sir G. F. Still It is easy to imagineContinue reading “A Brief History of Still’s Disease”
Category Archives: Uncategorized
“I do NOT have Rheumatoid Arthritis”
In our previous posts about Still’s disease, we have thoroughly reviewed the science behind the disease. As readers, you might have noticed we have been quite deliberate about not referring or comparing Still’s to any form of arthritis. We have focused the discussion on the severe complications of Still’s, including cytokine storms/MAS, blood clots, andContinue reading ““I do NOT have Rheumatoid Arthritis””
Season 1 Episode 2 – Sickcare vs Healthcare
For our second video, we dig into the U.S. sickcare system and what that means for patients with chronic disease. We’ve got a new page up that hosts these videos. Check out it out HERE. Episode 2 The U.S. “Sickcare” System: Navigating a Fragmented System not designed for complex care “Sickcare” vs “Healthcare” Reactionary medicineContinue reading “Season 1 Episode 2 – Sickcare vs Healthcare”
Season 1 Episode 1 – Introduction to Us
Welcome to our new video series on different topics. Our first topic is an introduction to us and who we are! Next, we discuss what it is like to have a rare and complex disease in the U.S. healthcare system. We will then be filming individual episodes digging deeper into insurance and treatment challenges andContinue reading “Season 1 Episode 1 – Introduction to Us”
Still’s Disease Complications: Introduction
Imagine for a moment, you are in a casino and before you are two giant dice. The first has on each of its sides the various organ systems while the second is covered in the endless inflammation pathways of the immune system. In this casino, these are the only dice you may use to gamble.Continue reading “Still’s Disease Complications: Introduction”
How are YOU doing?
by Shalla Newton, MSN, RN, NE-BC and David Maher Your providers are human: Burnout is REAL! Still’s disease is hard for us as patients, but also for your providers treating you. We are patients with complex medical histories on any normal day requiring resource-intensive alliances with our care teams. However, we are not in normalContinue reading “How are YOU doing?”
Immune-Overdrive: Cytokine Storms & COVID-19
by: Shalla Newton MSN, RN, NE-BC and David Maher We have been absolutely overwhelmed by the outpouring of support and responses from patients, family members/care-givers and rheumatology experts! Our target audience has responded saying they feel heard and better equipped with the science behind the complexity of Still’s disease. We are excited to be collaboratingContinue reading “Immune-Overdrive: Cytokine Storms & COVID-19”
Defining Adult Onset Still’s Disease (AOSD)
by: Shalla Newton MSN, RN, NE-BC and David Maher As AOSD patients ourselves we deeply feel a need for further information specifically on our diagnosis. We advocate for the two continuums to be denoted under the larger umbrella term of Still’s disease, but literature, FDA treatments and support groups/advocacy organizations have leaned into the SJIAContinue reading “Defining Adult Onset Still’s Disease (AOSD)”
Shalla’s story
Complex patient presents with…A nurse living with rare diseases in a broken system My crazy journey began in childhood unbeknownst to me as more than frequent childhood illnesses. I now know I was born with a genetic mutation that is classified as an ultra rare primary immunodeficiency (PID). The PID is a CTLA4 (T-cell) deficiency.Continue reading “Shalla’s story”
David’s story
The first time I remember having a Still’s disease flare, I was 16, and my family doctor told me I had carpal tunnel syndrome in both hands, at the same time I developed severe pleurisy (inflammation of the sac that lines the lungs) and pneumonia, severe fatigue, and general malaise. I was lucky that afterContinue reading “David’s story”
Still's disease, the 411 