Most people see the bed first. That’s what defines me to them. The bed in the living room, the fact that I’m always in it. When they picture me, they…
Patients living with chronic or rare diseases and the caregivers coordinating appointments, medications, and daily life often carry a quiet question alongside the medical work: what will last beyond the…
The CDC reports that approximately 17% of parents in the U.S. have a disabled child. These parents not only cope with the stress that accompanies their attempts to provide stability,…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
Living with a chronic health condition is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness…
The Phase 1b/2a RESOLVE clinical study set out to identify how safe and effective EP-104GI is for people living with a chronic immune-mediated disease called eosinophilic esophagitis (EoE). People with…
The importance of physician education and community support in healthcare cannot be understated. Well-educated physicians are better equipped to diagnose, treat, and manage a range of medical conditions to ensure…
Also known as the most common form of eczema, atopic dermatitis is a chronic pruritic skin condition that causes skin to become excessively itchy, dry, cracked, and discolored. Atopic dermatitis…
The other day I was speaking with a coaching client who suffers with a chronic health condition called dystonia, which is accompanied by chronic pain. I also live with dystonia…
It has been over four years since our lives were irreparably changed by the onset of the COVID-19 pandemic. With hundreds of millions of cases globally, and millions of associated…
I have lived with chronic pain from dystonia, a neurological movement disorder, for 23 years. The first 5 years my symptoms were so severe that I was barely able to…
Most of us have heard of the fight-or-flight stress response. It becomes activated when we believe there is a chance we can outfight or outrun real or perceived danger and…
Dupixent has long been known as a therapy which reduces itch, slows disease progression, and reduces exacerbations in a number of allergic conditions such as asthma, eczema, and nasal polyps.…
Corticosteroids are one of the standards-of-care for treating alopecia areata, alongside treatments such as topical sensitizers and Rogaine. However, none of these treatments have a high level of evidence in…
Having a chronic illness can be isolating. It can be difficult to share vulnerable and sensitive information about yourself with others, or to find ways to manage the trauma and…
In late January 2024, the U.S. Food and Drug Administration approved a label expansion for Dupixent (dupilumab). Dupixent, a monoclonal antibody targeting IL-4 and IL-13, is currently used to treat…
According to reporting from Healio Psoriatic Disease, the Food and Drug Administration (FDA) recently updated the label for Dupixent (dupilumab) in the indication of moderate-to-severe atopic dermatitis with moderate-to-severe hand…
Over the last three decades, researchers and doctors have noticed a concerning trend: increasing cases of eosinophilic esophagitis (EoE), a chronic digestive system disorder, in infants and children. In particular,…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
By Jodee Redmond from In The Cloud Copy Living with a chronic disease is a very stressful situation. It affects a person physically, mentally, emotionally, and spiritually. Chronic illnesses often…
Kristina Wolfe and Seth Rotberg first crossed paths on LinkedIn, recognizing one another as fellow patients. Kristina is passionate about public heath, health economics, and the way non-holistic approaches to…
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To…
Web-based Living Mindfully With Chronic Illness Support Group 2nd Tuesday of each month This is a support group for rare disease patients dealing with chronic illness who are seeking to…
Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign…
Web-based Living With Chronic Illness Support Group 4th Monday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Alicia Sloan, MSW, LICSW,…
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