What's it like to live with myasthenia gravis (MG)? Let Olivia Truncale tell you: The 19-year-old college sophomore was diagnosed just over two years ago, shortly after her legs gave…
While I truly believe that people are well-intentioned, their opinions and comments often miss the mark when it comes to what we experience living with dystonia, or any other chronic…
Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…
Would you climb 1,776 steps to raise money for charity? What if you were in a wheelchair? Julian Backhouse is in a wheelchair, but that isn’t stopping him from climbing…
Because her life has been defined not just by words, but by The Word, Connecticut evangelical pastor Nancy Butler (Pastor Nancy) has a Bible quotation stenciled in script over the…
Brie Peters is 25 years old and has been living with Cystic Fibrosis since she was 10 months old. This is Part 2 of her interview. Exercising had become an…
Bearing both common missense mutations ΔF508 and G551D, Briauna was diagnosed with Cystic Fibrosis (CF) as a 10 month old baby. As a child living and growing up with CF,…
Alexis Plofchan is now 22 years old. In parts 1 and 2 of her interview, Alexis detailed her journey with Lyme disease from pre-diagnosis to post-diagnosis and how Lyme changed…
The Myasthenia Gravis Foundation of Illinois is hosting the 2016 Strides Against MG Walk. This will be the foundation's fourth year hosting, so needless to say, they know what they're doing.…
PW Contributor Alexis Plofchan is 22 years old and a student at William and Mary. She and her parents have been fighting Lyme disease for the past eight years. In…
Myasthenia Gravis is a neuro-muscular autoimmune disease that can make the body go weak at any time. If you have Myasthenia or MG like me, you know that some days…
The old saying goes "When momma ain't happy, ain't nobody happy." And we all laugh a bit because there is a trace of truth in it. But what about when momma…
Here at Patient Worthy, we spill a lot of (virtual) ink talking about all aspects of living with a rare disease. Our goal is to be supportive and understanding, a…
Part of the symptoms, when you go back online and you look at some of the classic people that have acromegaly, the one that pops immediately is Andre the Giant.…
The above photo is when Cole arranged a virtual race and Facetimed with Hannah. We were in Ohio walking while Cole and her friend Heidi ran in Wisconsin. We even…
“Looking back to the years before being diagnosed, I remember that therapy helped a lot. But I sometimes wonder if I would have had those issues anyway or if it…
This is the last segment of Mariana's medical journey written by Mariana's mother, Carolina. Click here for part one and here for part two. Before the three month check up…
Okay, you guys, I got a boyfriend! I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know…
Hereditary Angioedema (HAE) is a rare disease—like an incredibly rare disease, affecting only about 1 in 10,000 to 1 in 50, 000 people. Despite that, over recent years, it’s gotten…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
Monday, May 16th was HAE Awareness Day. In addition to getting the word about HAE out to the general public and medical communities, every year HAE Day strives to "create an environment…
Rare diseases often go undiagnosed because they are, after all, rare. A rare disease isn't usually the first thing anyone thinks of, in light of certain symptoms. It's only when doctors know what…
A gymnast must be in top form to participate in competitions. As reported by the Amery Free Press, when Elli Meagher began to have problems with muscle weakness, weight gain, and…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
The right doctor and the right hospital can make all the difference when your child is diagnosed with a rare (and frankly terrifying) medical condition. That’s what London couple Sukhi…
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