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These Lessons Give Children with Chronic Illnesses a Chance to Be a Guitarist, Actor or Chef

Christal Castro was casually browsing her Facebook feed one day in 2018 when she came across a post from a friend that stopped her in mid-scroll. The post talked about a gala for an organization headquartered in Los Angeles called CoachArt that helps chronically ill kids. Children ages 5 to 18 could explore hobbies and skills through free classes, including painting, cooking, guitar lessons and martial arts.

Will California keep funding sickle cell care?

In June 2019, California Gov. Gavin Newsom signed the state’s annual budget into law—which that year included around $15 million (of some $215 billion total) to create and fund a statewide network of treatment centers for sickle cell disease, with training for health workers and improved diagnostic screening. Sickle cell disease, a group of rare genetic disorders characterized by abnormal hemoglobin, can be very painful, cause reduced life expectancy, and involve complications like severe anemi

Congress incentivizes rare disease research. Big Pharma exploits it.

After three years on prednisone, a steroid not recommended for long-term use, Amy G. saw a new specialist. She had been diagnosed with EGPA, a particularly rare type of the autoimmune disorder vasculitis, which causes blood vessels to be inflamed. When it’s not properly managed, people with EGPA—roughly five in every 200,000 adults—risk potentially fatal complications, including bleeding in the lungs. The doctor wanted to start her on Rituximab, a biologic medication that has been found to help.

When you're young, lonely, and chronically ill, online communities are a lifeline

Like many students in the fall of 2020, the pandemic threw a wrench into LC Newman’s university plans—not just socially, but physically. After a Covid infection, Newman, then a college sophomore in Tucson, Arizona, never got better. Her symptoms were wide-ranging: her heart felt like it was pounding out of her chest; she developed heat intolerance. That, and repeat infection concerns, led her to self-isolate from the few people she’d regularly spent time with.

For disabled jobseekers, discrimination is common—if you even get to apply

After becoming blind in his late 20s, designer and artist Marco Salsiccia had to learn to navigate the world through assistive technology—like a screen reader, software that speaks digital text and image descriptions aloud. Leveraging that experience, Salsiccia began work as an accessibility specialist, eventually working part-time at a well-known tech startup based in San Francisco (a key site of disability rights activism since the late ’60s).

Our transplant network wastes 25,000 organs a year. We're finally fixing it.

A bipartisan bill to reform the national organ donor network has reached President Joe Biden’s desk, spelling the likely end of a troubled monopoly in place for close to four decades. Signed, the law will let HHS officials, who have commended the changes, award multiple federal contracts to manage the network—part of a wider plan to secure better oversight and more transplants each year.

Why is it still so hard to get ADHD medication?

For nearly a year, many people with ADHD and ADD in the United States have struggled to get the medication they’ve been prescribed to manage their condition. Those difficulties stem from a shortage that started with the stimulant Adderall and its generics, then trickled to methylphenidate and lisdexamfetamine, also known as Ritalin and Vyvanse. These drugs are also prescribed to help manage conditions like narcolepsy, traumatic brain injuries, and long Covid.

SCOTUS just upheld the civil rights of millions of disabled and aging people

On Thursday, the Supreme Court issued a landmark 7-2 ruling affecting millions of aging and disabled people: Providers of federally funded health services like Medicaid or Medicare, the court ruled—such as public and private nursing homes—can be sued by individuals for failures and lapses in care. Following the death of 85-year-old Gorgi “Jorgo” Talevski in October 2021, his surviving family members sued the state-run Health and Hospital Corporation of Marion County, Indiana, alleging that Tale

For Medically Fragile Kids, Access to Palliative Care Depends on Family Resources

In February 2021, Geetika Bajpai requested an appointment at Valley Children’s Hospital for her son Aiden. Aiden was less than a year old. He was born with Pitt-Hopkins syndrome, a rare, neurological disorder, which causes people to have an intellectual disability and also poor muscle coordination. Like many people with rare diseases, it took some time for his parents to learn of his exact diagnosis. Even before they did, in June 2021, his parents wanted to make sure he had the best quality of

Revisiting #DisabledJoy Five Years Later: How a Hashtag of Pride Continues to Resonate

As a disability advocate, Andrew Farkash had long been struck by the fact that many people seem to equate disability with unhappiness. In March 2018 he launched a new hashtag on Twitter – #DisabledJoy – to show how crucial joy is to disabled people. “There’s a common misconception that you can’t be Disabled and happy,” Farkash wrote on Twitter. “That you can’t express joy, and if you do, you must not be hurting or Disabled anymore. I propose a new hashtag to empower us and show people otherwise

Discrimination lawsuit against HHMI spotlights barriers faced by scientists with disabilities

University of Michigan pediatric neurologist Vivian Cheung made a name for herself studying rare genetic diseases, and in 2008 — when she was on the faculty at the University of Pennsylvania — was hired as a Howard Hughes Medical Institute investigator, an honor for which she received $1 million a year over the next 12 years to further her research. But after Cheung herself developed a genetic condition so rare it doesn’t have an official name, causing her to start losing her vision, HHMI decide

With Climate Change, Comes More Potential Complications for People with Lupus

With the clock approaching midnight, Julia Irzyk could not fall asleep. She was playing solitaire, with her feet up on her La-Z-Boy sofa in her home in the Sherman Oaks area of Los Angeles. She was not just experiencing insomnia thinking about the state of the world: Her blood pressure rose to 195 over 110, well above the norm for most adults of less than 120 over less than 80, according to the National Institute of Aging. That meant she was experiencing a hypertensive crisis, likely linked to her autoimmune disorder lupus. Emotional stress can affect blood pressure, so staying calm was important, yet Irzyk was failing miserably. During this episode in August 2022, her husband — her caregiver — was over 2,000 miles away on a business trip, in Chicago. Her dark gray cat, Disney, seemed to sense something was wrong but could not exactly help her receive emergency healthcare.

What Else Needs to Happen to Improve Insulin Access and Affordability?

Eli Lilly will be reducing the prices of some commonly-used insulins by 70%, the pharmaceutical company announced in a news release last week. The company also said it will expand its Insulin Value Program, which caps out-of-pocket costs at $35 or less per month. The decision comes following increased pressure from patient advocates—along with President Joe Biden—about the high cost of insulin, which can make the drug difficult to obtain for many who need it.

A former Amazon employee is trying to manage his lupus nephritis without insurance. He doesn't miss his long shifts.

• Jordan Flowers was terminated while pushing for accommodations from his employer, Amazon. • Flowers lives with lupus nephritis, a type of lupus affecting his kidneys. • He's spent his time since his termination pushing for the certification of the Amazon Labor Union. As a cofounder of the Amazon Labor Union and its active predecessor, the Congress of Essential Workers, Jordan Flowers has been fighting for workers' rights at the retail giant. At the same time, Flowers, 24, is trying to contro

5 Actually Helpful New Year's Resolutions for People With Chronic Illness and Disability

With each impending new year there's also the pressure to introduce a "new you" into the world—one that exercises more or saves money or switches up their diet. But in reality, many people who live with chronic illness and other disabilities don't have the time or energy to completely transform our lives—especially when caring for oneself is already a full-time job. Still, there are some steps that people with chronic illness and other disabilities can introduce into their lives for the new ye

Experts say it's OK to eat whatever you want over the holidays—there's just one rule

As the year winds down, the rhetoric around weight loss resolutions ramps up. Additionally, ‘tis the season for unsolicited comments on how much we’re eating. For those of us trying to celebrate the holidays with a family meal, or just enjoy a pumpkin-spiced snack, this could lead to asking ourselves questions like, “Do I deserve to have this food?” or “Will my body pay for this later?”

Medical Diets Have Gone Mainstream for All the Wrong Reasons

Like many people, I was extremely stressed when the COVID-19 pandemic hit in March 2020, especially as someone who has an autoimmune disease. My anxiety manifested itself in physical ways, and I started to become sick after I ate anything. After I saw a gastroenterologist, he recommended that I try the low FODMAP diet, which cuts out food and drinks with fermentable oligosaccharides, disaccharides, monosaccharides, and polyol, to figure out what types of food were making me sick. Due to not eating enough, I was very, very tired and light-headed.

Why It Helps When a Celebrity Is Open About Their Health

After I was diagnosed with systemic urticarial vasculitis in January 2018, I took to Google to see what other people's experiences with vasculitis were like. The only celebrities that came up on my original search were Janet Leigh and Harold Ramis — and both, unfortunately, had died from complications from vasculitis. As a then-20-year-old living with debilitating fatigue, chronic pain, and some respiratory issues, those results did not help the dwindling hope I had that my life would move forw

Some patients say a commonly prescribed steroid triggered mania and suicidal ideation. I should know — it happened to me.

• Prednisone, a steroid, is prescribed to millions of Americans, often to treat chronic inflammation. • While mood swings are a known side effect, some patients say they experienced much worse. • They say prednisone made them manic and suicidal. Some had to check into the ER. I was convinced everyone would be better off without me. It was the spring of 2018, and a few days earlier I had been admitted to the emergency room for a flare-up of vasculitis, a blood-vessel-inflammation disease that

How to Dismantle Systemic Ableism, According to Disabled People

We urgently need your help. DAME reports the stories that need to be told, from perspectives that aren’t heard enough. In times of crisis it is even more critical that these voices are not overlooked, but COVID-19 has impacted our ability to keep publishing. Please support our mission by joining today to help us keep reporting. Since March 2020, Angela Meriquez Vázquez has been living with migraines, fatigue, brain fog, heart palpitations, and insomnia. The debilitating symptoms Vazquez experie
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