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,…
Conozcamos a la colaboradora de PatientWorthy mas reciente! Nikole es una mamá con experiencia profesional en la educación y una increíble visión de las realidades que muchos pacientes con enfermedades…
Share the spirit of healing. Those with rare diseases seek healing all year round. The holidays are for a different kind of healing though, healing of the spirit and soul.…
Whichever holiday you celebrate can be difficult when you're living with a chronic illness. We hope that you feel well enough to enjoy your favorite part of the season and…
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…
Para ponerse al día en el viaje de la enfermedad de Lyme de Alexis, echa un vistazo a la parte 1 de su historia aquí. "En mi línea de trabajo,…
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…
Yes, it is the season of holidays. Happy Christmahanakwanzika! Or whichever holiday you celebrate! I hope you experience peace, love and joy this season.
‘Tis the season for caring and sharing, and I know of no other mother and family who need it more—not just compassion and care, but also effective treatments for her…
En el sitio web fabuloso estilo de vida Fundación de Fibrosis Quística, blogger Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si usted…
Status epilepticus (SE) is a serious, problematic, frightening, and often fatal condition, relating to uncontrolled seizures that continue to happen without any type of recovery between the seizures. SE is a…
I know I’ve said it before, but whatever, I’m saying it again: 2016 has been an awful year. Both personally and globally, it’s been the total pits, to the point…
If this holiday season finds you with extra love to share, then I hope can share a little bit to help fund research for a rare disease so that others…
’Tis the season to indulge in the spirit of giving. And that’s Kim Fredrickson's exact intention. Kim is an author, blogger, and marriage & family therapist who was diagnosed with…
Cuando veo "Marvel" y una imagen como la siguiente ... ... Veo los ingredientes de un superhéroe! "Un equipo de investigadores en el Trinity College de Dublín ha descubierto lo…
Loss is a terrible thing. It’s heavy and overwhelming, and for me, it’s sometimes such a weight that it can be hard to lift yourself up in the morning. Yet,…
Some more good news to share for people who are living with chronic conditions such as transverse myelitis (TM), a rare condition that strikes the central nervous system as seen…
Hey, a happy holidays meme without using red and green! Here’s wishing you peace and love during the holidays. Even if you don’t celebrate a specific holiday, I hope the…
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