This Family Battling Lyme is Giving Back to Their Community
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…
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…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
What is a strawfie? A selfie (picture of yourself) while breathing through a straw. You've met Cassie Hawthorne in Patient Worthy's write up Model with Cystic Fibrosis Bringing Awareness to Disease earlier…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
When most people think of Lyme disease, the first thing that comes to mind is usually a big, fat tick (immediately followed by manic itching). What’s harder to wrap your…
With baseball season upon us, we wanted to check in on our Ankylosing Spondylitis (AS) celebrity baseball player Franklin Guitierrez, who turned misfortune into a learning opportunity, and rises like the…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
PW Contributor and caregiver Gloria Szanto, shares with us how she is able to live a healthy, family-filled, yet busy life while caregiving for her husband. Hi, my name is…