Podemos estar de cara a la temporada de vacaciones, pero no hay Ho! ¡Ho! ¡Ho! en HFHo. La mayoría de la gente ni siquiera se puede decir que, por no…
It is a truth universally acknowledged that it's never easy having a rare disease. From Behcet's disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and…
What is it about inspiration? Where does it come from? If you are living with idiopathic pulmonary fibrosis (IPF), you may want to feel moved, and then to use that…
I’ve been there. You’ve been there. We’ve all been there. And I’m thinking it’s a safe bet to say that we all hate it. We all know the feeling. When…
Okay, I’m about to start this article with a very microcosmic example of a much larger medical solution. A couple of weeks ago, I was following Ray Charles’ lead and…
Es una especie de insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión quira a nivel internacional . Y tal vez los médicos…
"Success largely depends on two factors. Number one is each individual person's decision to take action. Number two is our interaction with each other and support of each other in…
Kudos to the BBC for their documentary: Employable Me for bringing to light the plight of people living with Tourette syndrome (TS)! Tourette syndrome is seriously stigmatized, which adds layers of…
When your kids become adults, does being their mother stop? If you ask Susannah Prater, the answer is a resounding, “Absolutely not!” The Waverly News tells us that Susannah is a…
Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out…
I found an interesting article about Trigeminal Neuralgia (TNA) which was a real eye-opener for me, and I’d like to share the highlights with you. If you or your loved…
Para alguien que vive con una enfermedad crónica progresiva, la vida no es ninguna "caja de bombones." No importa cómo las personas positivas u optimistas son, vivir con el dolor…
Flip through any beauty magazine and all you'll see are women under that age of 30 selling skin creams, anti-aging products, make-up designed to capture that special glow of youth.…
When you're single, it seems like everyone on the planet is in a relationship. You see people holding hands, sitting side-by-side on the park bench, pushing babies in strollers. You…
While Trey Finomore, a preteen from Colorado, was visiting family in Ohio, his parents noticed he was collecting a lot of bruises. Most of the time, it's expected kids will…
Every year, my friend, Meg Marlowe, participates in the Walk to Defeat ALS, which benefits research for amyotrophic lateral sclerosis, or ALS. Meg's a great person, but beyond that, she has a very personal reason…
Movies, television shows, and books can create a vision of a world with endless possibilities. The future can be portrayed in ways that we would find impossible in the present…
Are you looking for an Addison’s disease community so you can share similar experiences and learn more together? If so, Circle of Moms hosted by Popsugar may have the online…
For 26 years, police officer Dave Clement, put his life on the line every day for the people of Seattle. He often worked with the poorest of the poor, helping to…
For many, the 21st Century Cures Act could mean the difference between life and death: It will give patients access to drugs that they previously didn't have. Personally, I am…
De acuerdo con la Fundación de Fibrosis Quística, cerca de 30.000 personas viven con FQ en los EE.UU., y sólo alrededor de 1.000 nuevos casos son diagnosticados cada año. La…
PatientWorthy se ha unido a CysticLife.org para poner de relieve algunos de los miembros de su comunidad increíble! CysticLife.org surgió de un blog iniciado por CF paciente, Ronnie Sharpe, para…
It's Frida-yay Everyone! Celebrate it by catching up on this week's Editor's Choice. 'Tis the season of giving and we have a heartbreaking story on a case of gastroschisis that will…
So, it’s Friday afternoon, and you’re at work in a crammed meeting room. You’re looking forward to dinner with some friends. Only two more hours to go. All you’ve gotta…
Tyrosinemia is a hereditary disease that causes a disruption in the body's ability to break down tyrosine, an amino acid. The liver lacks the correct enzyme and, as a result, it…
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