Happy Thanksgiving Patient Worthians! We hope you are recovering from big meals and continuing to spend time with family this weekend. Editor's choice this week focuses on gratitude expressed by our…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity?…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
Para muchos, como yo, las vacaciones pueden ser agridulce, ya veces duro. Todos los días, me siento agradecido por las personas que forman parte de mi vida. A veces, sin…
Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
¿Alguna vez tiene alguna pregunta acerca de la quema de una enfermedad rara que te mueres por saber la respuesta? Nosotros también. Un montón de ellos. Es por eso que…
Happy Pre-Thanksgiving Week Friends! It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and…
Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…
Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…
Si usted tiene un amigo o miembro de la familia que recientemente fue diagnosticado con la enfermedad de Behçet, es el momento de educar acerca de la enfermedad, porque cuanto…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
Happy Post-USA Election Day Friends! TGIF Patient Worthians, am I right?! Hopefully this weekend is full of rest, relaxation and positivity! Maybe just avoid social media for a while and hang…
¿No te odio, haga clic en el cebo? ¡Hago! Mientras que la búsqueda de información real acerca de la Enfermedad de Behcet - porque, lo necesitamos - me encontré con…
Describing your acromegaly isn’t easy. I’m sure you’ve been met with enough blank stares or uncomfortable jokes about “giants” to last a lifetime. Fact is, sometimes people will not get…
Happy Weekend Before the Election Patient Worthians! Get some rest, Tuesday is going to be a big one in the United States. But while you're hanging out, check out these…
Cuando se tiene una enfermedad rara, las personas están obligados a darle la mirada. Usted sabe que el uno. Se dice: "Oh, bendita tu corazón; que ha perdido tanto ".…
Hello I’m Kara, a woman who was finally, properly diagnosed 10 years ago with acromegaly. I still deal with residual issues that started 20 years ago on a daily basis. …
Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…
Happy Halloween Weekend Patient Worthians! PW Contributor Tom has two of the most popular posts this week! In one, he gives us a surprising outlook on dystonia. Additionally, he talks about…
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
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