The Shoulder Flop
This article was originally published on Luke's blog and is shared here with permission. Keeping our kids safe is every parent’s number one job. Even as an adult I associate…
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The Shoulder Flop
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Here’s Why Support Groups are So Important in the Narcolepsy Community
San Diego is rumored to have one of the nicest climates in the United States. From what I've heard, it's a balmy 72 degrees almost year-round, and the sky is…
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Here’s Why Support Groups are So Important in the Narcolepsy Community
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What to Expect When You’re Diagnosed with Sickle Cell Disease (SCD)
What does it mean if you have the sickle cell trait? Or what if you have sickle cell disease? Does it mean you can’t exercise? Does it mean you will…
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What to Expect When You’re Diagnosed with Sickle Cell Disease (SCD)
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Familial Dysautonomia Caregiver Shocks the Inclusion Debate
My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…
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Familial Dysautonomia Caregiver Shocks the Inclusion Debate
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Another Look at the Misconceptions of Narcolepsy
It’s a plot device. It’s a joke to be exploited by comedians. It shows up as the punchline in movie after movie. As soon as it comes out that a…
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Another Look at the Misconceptions of Narcolepsy
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How One Little JIA Softball Dynamo Gives Us Hope
Growing pains usually occur in younger children and are equally common in girls and boys. They are characterized by aches and pains and often occur in the lower limbs, usually…
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How One Little JIA Softball Dynamo Gives Us Hope
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When Things Get Tough, 11-Year-Old Girl with Sickle Cell Anemia Gets Tougher
Really? Really. As if having one serious chronic disease isn’t enough, what makes God say, “Hmm…Let’s give this poor, innocent child, another chronic illness"?! In this case, I'm talking about…
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When Things Get Tough, 11-Year-Old Girl with Sickle Cell Anemia Gets Tougher
Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease
Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…
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Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease
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Prince and Pfeiffer
This article was originally written a year ago. We are republishing it today in Prince's memory. I’m sure you’ve seen countless tributes to Prince in honor of his legacy.…
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Prince and Pfeiffer
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Parents: Did You Know the Comfort Food You’re Feeding Your Kids Could Lead to NASH?
Feeling distraught because your child may have nonalcoholic fatty liver disease (NAFLD)? Well you should be—but keep in mind there is still time for hope. I read an easily digestible…
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Parents: Did You Know the Comfort Food You’re Feeding Your Kids Could Lead to NASH?
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Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation
Duchenne muscular dystrophy (DMD) affects approximately 15,000 to 20,000 young boys in the US, but for the Richard and Jamie Romito family, those numbers mean nothing. All three of their sons…
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Duchenne Muscular Dystrophy Motivated These Parents to Start the Romito Foundation
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How This Star Athlete Scores BIG with Sickle Cell Anemia
There is a well-known football player who is in one of the biggest fights of his life, and his courage and fierce determination to help raise awareness about sickle cell…
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How This Star Athlete Scores BIG with Sickle Cell Anemia
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Pets and PI: Tips for Making It Work
As a young girl, Joanna found a cat scared and stranded in a tree. Muffin became her first cat, and so began Joanna’s lifelong love of rescuing animals. But Joanna has…
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Pets and PI: Tips for Making It Work
Progressive Shopping for Superheroes
The following blog post was written on October 4th, 2016 by a #raredad whose daughter is battling a chronic illness. With his permission, we are republishing this powerful memory here.…
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Progressive Shopping for Superheroes
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This Video Will Melt Your Heart and Raise Money for Diamond Blackfan Anemia Research
Diamond Blackfan anemia (DBA) sounds like the villainous star of an action movie, but it's not. It's an extremely rare blood disorder wherein the bone marrow doesn't make enough red…
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This Video Will Melt Your Heart and Raise Money for Diamond Blackfan Anemia Research
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Get Ready for World PID Week – April 22 – 29, 2017!
Common variable immune deficiency is just one of a cluster of disorders under the primary immunodeficiency diseases (PID) umbrella. People with this rare condition are often repeatedly misdiagnosed because there is a…
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Get Ready for World PID Week – April 22 – 29, 2017!
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A “Little Fighter” with Zellweger Syndrome Celebrates His First Birthday
Peter and his wife Ashleigh call their son Riley their “little fighter.”This is his nickname because he made it to his first birthday, which was well beyond what doctors told…
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A “Little Fighter” with Zellweger Syndrome Celebrates His First Birthday
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Buddy, Can You Spare a Pint (of Blood) for Aplastic Anemia?
I donate blood whenever I can. Is it a fun-time activity? Nope. Let's face it: Nobody likes to get stuck with a needle. So why do I bother? I donate because other…
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Buddy, Can You Spare a Pint (of Blood) for Aplastic Anemia?
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From Sickle Cell to Inspiration: How Everyone Can Learn from This Teenage Girl!
Teresa is a 16-year-old girl who is changing the face of sickle cell anemia (SCA) disease. And… SHE… ROCKS! Instead of sitting back and feeling sorry for herself, this beautiful…
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From Sickle Cell to Inspiration: How Everyone Can Learn from This Teenage Girl!
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Running to the Future: Even Acromegaly Cannot Stop This Man
Runner’s high: the euphoric sensation that endurance athletes feel when they exercise for an extended period of time. For those who have never felt it, it sounds like the Fountain…
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Running to the Future: Even Acromegaly Cannot Stop This Man
Bravery in the Face of Pain: How One Woman Faces Down CRPS
Sudden. Intense. Pain. It feels like a burning sensation. Your toes, or your fingers, or your knees feel engulfed in flames. There is pressure, and there is pain. Where did…
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Bravery in the Face of Pain: How One Woman Faces Down CRPS
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Patients with Spinal Muscular Atrophy Celebrate First FDA-Approved Treatment
Did you know that the #1 genetic cause of death for infants is spinal muscular atrophy (SMA)? It quickly robs the infant of physical strength, rendering the child unable to…
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Patients with Spinal Muscular Atrophy Celebrate First FDA-Approved Treatment
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The Good-News-Bad-News Basics of Fatty Liver Disease and NASH
There's some promising news about a hormone therapy for nonalcoholic steatohepatitis (NASH). Read on, but first, let's put things into context with some practical, real-life background stuff... How was your…
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The Good-News-Bad-News Basics of Fatty Liver Disease and NASH
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Can This Wrong be Righted for a Long Ago Hansen’s Patient?
The way the Japanese government handled Hansen's disease patients during the 20th century wasn't very humane. They were sent to live in sanatoriums, separated from their families, and shunned by…
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Can This Wrong be Righted for a Long Ago Hansen’s Patient?
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Here’s How This Young Man with Stargardt Disease is Beating the Odds
I love to read a good story about someone overcoming the odds. A young man living with Stargardt disease has done just that this month! He is the first Indian to…
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Here’s How This Young Man with Stargardt Disease is Beating the Odds
