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…
For most people, the new year begins January 1st. me, my new year begins in early September. Why? Because I am a teacher. But not just any teacher. A full-time…
During New Year’s, it is impossible to take more than a few steps without bumping into someone’s resolutions. For us Lymies, it’s a bit different; we didn’t actively choose to…
Instituto Franciscano para la Ciencia y la Salud en Steubenville, Ohio patrocina la investigación sobre defectos metabólicos que pueden conducir a trastornos convulsivos relacionados mitocondriales raras. Si bien esta es…
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.…
After the diagnosis/Self harming thoughts After being diagnosed with dystonia and learning it is not a temporary problem (or if you have lived with it for years and are feeling…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
I wrote the following poem when I was completely broken due to chronic pain. It is unfathomable to so many doctors that someone in so much pain can sit there…
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…
Como usted probablemente sabe por ahora, este mes, PatientWorthy se ha unido a CysticLife.org para difundir el conocimiento de la FQ y apoyar su colaboración con la Clínica Mayo para…
Did you know there are more than 100 different types of liver disease? Also, that the liver is the second largest organ in the body? Both are true. Most people…
I can still remember the day when my overt trust in my doctor put my own health at risk. The ideal doctor and patient relationship never really developed. In retrospect,…
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…
Do you ever have those moments where you're doing something that seems very routine, but then you realize with sudden clarity how much of it is affected by your chronic…
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…
Epidermolysis bullosa (EB) is a disorder characterized by blistering of the skin. It also affects all the body's mucous membranes, so while the blisters may be visible, the person's lips, tongue, mouth,…
She stands there with opened eyes Forgotten memories, stolen by time At first she speaks softly, Her words never heard. Then she yells FIRMLY Still not one head turned. She…
For anyone living with severe chronic pain from Complex Regional Pain Syndrome (CRPS), the best possible gift they could receive—short of a cure—would be a good treatment. To date, however,…
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