Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.
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Recently I read an interesting article about a new med that’s been shown to speed the production of blood platelets by as much as 40% which could potentially improve the…
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Aplastic Anemia? What To Do If You Are Rejected for Life-Saving Clinical Trial
I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…
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Courage Under Fire: Why This Mainstream Mom is My Narcolepsy Hero!
Ya know that old wives’ tale about bad things always happening in threes? Well, here’s a perfect example of why you should never believe in "that old witchy stuff": Three AMAZING…
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Here’s How to Be More Competitive in College with Narcolepsy
I just finished reading about narcolepsy lifestyle adjustments on the Narcolepsy Network’s site, which I found helpful, but I’m really torn about what to do. Ugh. I have a colleague…
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What to Do If You Suspect Your Coworker Has Narcolepsy?
I first wrote about Julie Flygare back in 2015 and it’s awesome to hear that she’s as committed as ever to advancing the cause of raising awareness about narcolepsy. I got the recent scoop…
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How to Get Your Narcolepsy College Scholarship Award
March 12th, 2016 is Suddenly Sleepy Saturday, a day to help spread awareness about people living with narcolepsy. I’m heartened to learn about this campaign, because far too many Americans…
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Narcolepsy: Neglected and Potentially Deadly
Soccer star legend and two-time Olympic Gold Medalist, Mia Hamm, whose real name is Mariel Margaret Garciaparra, is rocking the aplastic anemia community by sharing her personal story to inspire…
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Soccer Legend Mia Hamm Kicks Aplastic Anemia Into Stratosphere
About a week ago, my best friend’s husband had a life-threatening emergency and was rushed to the ER. So when I got the call late that night, I too rushed to…
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How to Avoid Needless Hospitalizations with Glut1 DS
Okay, people! Let’s hear it for Kristen, a fiercely determined young woman who refuses to give up after being diagnosed with postural orthostatic tachycardia syndrome (POTS). I feel absolutely dumbstruck…
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If Seeing Is Believing, This Mother Will Make You Believe In POTS
Imagine your newborn not thriving? Imagine how helpless and frightened you’d feel if your child’s heart and muscles were weak. Devastating. Listen up people, there’s important information you need to know…
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Is The Government Finally Doing Something Right By Your Children?
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Every now and then, you come across important information that really screams for your attention and you’ve just gotta share it. Here’s the scoop! If your loved one has been…
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How to Get Your Tyrosinemia Dream Team for Excellent Care!
The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…
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How to Not Die from Cystinosis: New Research on Treatments Offer Hope
It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to…
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How To Save Your Life When Caring For Muscular Dystrophy
Okay, call me crazy. Call me SNARKY, but this is ridiculous! Here’s another perfect example of: Not having all of the facts! OR Stupidity that almost gets an innocent young…
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This is What Happens When Parents Are Clueless
I feel so inspired by Canadian doctors and their healthcare system! I recently read an interesting post from Julie; she and her husband live in Canada and are the proud…
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What You Need to Know About Newborn Testing for Tyrosinemia in Canada
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
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3 Easy Steps To Get Your Expensive Drugs from Big Pharma
Listen up, people! Are you living with a neurological disease or condition? Do you want to inspire people by sharing your personal story on video? If so, the American Academy…
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Want to Break Barriers? Share Your Inspirational Video and Win Big!
When I think back to my school days in the South during the 1960s and ‘70s, I’m still haunted by some of the crazy things that I witnessed. For example,…
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Amazing Students at Colorado School are Smart AND Kind
Yesterday, I read an article posted in Cystic Fibrosis News Today by Patricia Silva, PhD, that was pretty thought-provoking. Scientists have discovered there is a commonality shared by people who…
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What Do CF And Alcohol Have In Common? It’s In The Genes
I am jumping for joy after learning there’s new hope for people in the CGD community! In October 2015, Horizon Pharma, headquartered in Dublin, Ireland, announced they will be opening…
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It Ain’t No Miracle, But Free Tests for CGD Will Make You Smile
I read an article recently by Andrew Smith that has me baffled—not by him, but rather the alarming facts that he discussed about people with cystic fibrosis (CF) who elect…
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If You Have Cystic Fibrosis, Are You Crazy Not To Want a Transplant?
In November 2015, PatientWorthy sounded off on an article that I really liked called: “A Day in the Life of a Narcoleptic” by Steven Jackson. I applauded (and still do)…
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Narcolepsy Fried Her Brains. What You Need to Know.
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In an effort to learn more about neuromyelitis optica (NMO)—a chronic illness also known as Devic’s syndrome or Devic’s disease—I tuned into another YouTube video of a PhD. He'd been…
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NMO and How to Rock the World of a Scientist
It’s happened to all of us. It’s Friday afternoon. You’re at the airport, waiting anxiously by the gate to catch the next flight out. It’s been far too many days…
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This is What Happens When Airline Passengers Smell A Poopy Diaper
If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
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“Girl Next Door’s” Inspiring Destiny With Cystic Fibrosis and Exercise