Rare disease living comes with its own set of highs and lows. Experiencing a myasthenia gravis crisis can be a terrifying ordeal. And not just for the person with myasthenia…
A little more than a year ago, a little girl in Michigan was critically ill. Doctors were hopeful they could help her, but there were no guarantees. Lilly Vanden Bosch,…
Cuando uno es joven, saludable y próspera, es difícil imaginar que es posible ser derribados por una enfermedad crónica, como la espondilitis anquilosante (EA). Como muchos jóvenes, "M" estaba libre…
Besties are… well… the best! Lauren Smith just earned a Best of the Besties award for friendship by deciding to run in the Marathon de Paris 2017 on April 9,…
So many workouts, so many excuses. Running? Cramps in your side. Swimming? Hate getting wet. Pilates? Expensive. Spin class? A headache. Walking? Um... Finally, an exercise truly devoid of downsides.…
Non-alcoholic fatter liver disease (NAFLD) is near and dear to my heart. Let’s just say we go waaay back. Before I get to how we “met,” let me give you…
Ir a la universidad es un gran cambio para cualquier persona. Lo más probable es que vive en una ciudad nueva, que habita en una nueva habitación, y rodeado de…
Ammonia. Even if you don’t know much about it, you know it’s great for cleaning but not so great for ingesting. You… you do know not to ingest it, right?…
The word Love. What does that mean to you? Most people say: "Well holding hands, kissing, and spending lots of time together." Love is a strong word. I feel if you…
Happy Almost-New-Year Patient Worthians! What is your new year resolution? As someone living with a chronic illness, mine is to get back to my cardiologist for that much-needed check-up I've…
Yes, it's that time again, when holiday meals and homemade pies entice us to stay at the table longer than we otherwise might. With the holiday season in full effect,…
Frustration. It winds you up and can take so much out of you. Not only does it suck energy, but it also distracts and can steal quite a bit of time.…
What does the word ‘leadership’ mean to you? Does it mean being good at your job, being well liked, or being in charge of everyone? There are plenty of people…
Podría ser una historia de una novela de espías: Si bien se están pasando mensajes codificados, un intruso intenta infiltrarse e interrumpir la comunicación. Parte de la misión implica el…
It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…
The Model-T. T-Shirts. T-Rex. Lots of really good and/or interesting things feature the letter T and a hyphen—including, if you have pulmonary fibrosis (PF), rare T-cells. Pulmonary fibrosis literally means…
Do you ever you read a headline and do a double take? The “what the hell did I just read” head shake combined with the eye squint—just in case you…
'Tis the season to help those in need. Complex regional pain syndrome, or CRPS, can be so severe, it drives some people to desperate ends. It usually starts with an…
On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.” She…
There is a man in my church whose 12 year old daughter has Lennox-Gastaut syndrome (LGS). If you're not familiar with this particular form of epilepsy, let me just say…
Before we take a look at a rare disease called Freidrich ataxia, or FA, let's first understand the meaning of the word "ataxia." Ataxia includes loss or lack of muscle…
What makes a complex subject like postural orthostatic, tachycardia syndrome (POTS) easy to understand? For me, good intentions are a large part of the equation. That’s one reason I had high…
Press release: 23rd December 2016 Dozens of celebrities have thrown their weight behind a campaign for the cystic fibrosis community in both Ireland and UK to gain access to a new, ground-breaking…
Todo el mundo recuerda al chico en la clase que no paraba de hablar el tiempo suficiente para saber que sonó la campana del almuerzo. O la fecha de la…
Happy Christmas/Hanukkah/Holiday break Patient Worthians! This week, we are highlighting our amazing contributors for all of their heartfelt and honest stories. One post is about how to stay out of…
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