A Life Interrupted and a Mystery Solved
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
When you are diagnosed with a serious chronic illness like glomerulonephritis, you enter into an entirely new world. Suddenly, you’re spending time inside buildings most people never even noticed. Almost…
Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
There is currently no cure for most chronic health conditions so treatments are focused on reducing symptoms. I live with a condition called dystonia, a painful neurological movement disorder. Like…
Over the last eight months, I've been in post-treatment Lyme life, allowing me to be more social. With that comes the dreaded social interactions where I have to explain why I'm tired, am…
Do you ever have those days where you're trying so hard to put one foot in front of the other, and then someone has the balls to ask you why…
It's no secret that Scrubs helped me get through Lyme treatment, as it is surprisingly profound. In Season 5, Episode 6 there is a very pleasant older woman who has…
Welcome to this week's Editor's Choice! Mysthenia Gravis has to be treated delicately, as it's unpredictable and often incredibly painful. That's why the blogger we've highlighted below wants you to…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
So, you got the big ol' BD diagnosis, huh? And now you're trying to figure out how to live with it, right? Same here. See, Behcet's disease (or Behcet's syndrome) is…
Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
Happy Independence Day! For those of you in the United States, usually the Fourth of July weekend is a filled with fun celebrations and family. But what about those of…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
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…