Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.
Okay, people in the CF Community, listen up! A new targeted treatment for Cystic Fibrosis (CF) may be on the horizon sooner vs. later, and I’m pretty freaking excited about it! This…
Not long ago, Vertex Pharmaceuticals scored a big one for their investors—the European Commission has approved the use of ORKAMBI® (lumacaftor/ivacaftor), for the treatment of cystic fibrosis. This breakthrough treatment will be used…
News services recently picked up a fascinating story that I think everyone should read! Little 8-year-old Kayleigh Petersen, from East Brunswick, New Jersey, stunned a packed crowd of loyal hockey…
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…
Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten! At the ripe…
Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…
When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…
If you or your loved one is living with a rare chronic disease, you’ve probably gone through the various stages of grief: denial, anger, depression, bargaining, and hopefully acceptance. Depending…
If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…
For anyone living with a progressive chronic illness, life ain’t no “box of chocolates.” No matter how positive or optimistic people are, living with pain and fatigue--day in and day…
Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…
‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
In August 2015, pharmaceutical giant, Shire, made public their new deal with Sanquin, the company that manufactures CINRYZE®. CINRYZE is a drug that is indicated for the rare disease disorder,…
Eric Mevis, suffers from dystonia, in his case oral mandibular dystonia, a rare disease that causes facial muscles, such as those in his lips and tongue, to twist and contract uncontrollably.…
Familial hypercholesterolemia (FH), a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…
In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
To all of the friends and families of people who have narcolepsy or symptoms of narcolepsy: LISTEN UP! In case you weren’t aware, narcolepsy is a serious and chronic, yet…
California is home to a large number of amusement parks that are beloved by thousands of children and their families. Of course we love theme parks; it’s American as apple…
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Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
