Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and…
Jana and Sara are 32 year old twins, born and raised in North Dakota. We had the pleasure of speaking with both of these precious young ladies about their rare…
I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…
Happy Father's Day Week Patient Worthians! We hope you celebrated your rare dads this week-- because they deserve it. As you know, it's Myasthenia Gravis Awareness Month so we are highlighting some new drug…
If you have Postural Orthostatic Tachycardia Syndrome (POTS) then you are familiar with its on-and-off symptoms and living with generally unreliable health. What's more, is you may try to explain it…
Happy Almost-Father's Day Patient Worthians! This week, we have some important information on the rare disease myasthenia gravis in the spirit of June being it's awareness month. Also, have you ever…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…
When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…
Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading awareness about these diseases! We…
When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…
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…
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…
Happy Friday Patient Worthians! This week, we have some riveting stories by three PW contributors. Firstly, we have Alexis battling Lyme disease for 8 years and a surprising ending to Part 1…
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…
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…
“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…
Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…
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.…
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.…
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…
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