Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…
The above photo is when Cole arranged a virtual race and Facetimed with Hannah. We were in Ohio walking while Cole and her friend Heidi ran in Wisconsin. We even…
“Looking back to the years before being diagnosed, I remember that therapy helped a lot. But I sometimes wonder if I would have had those issues anyway or if it…
This is the last segment of Mariana's medical journey written by Mariana's mother, Carolina. Click here for part one and here for part two. Before the three month check up…
Okay, you guys, I got a boyfriend! I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know…
La natación es no sólo un gran ejercicio en general, pero también es un ejercicio fantástico si usted está viviendo con espondilitis anquilosante. No es tan discordante para la columna…
No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…
Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…
Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…
Parece que Pfizer quiere comprar una compañía sueca que proporciona un tratamiento para la enfermedad inflamatoria multisistémica de inicio neonatal, (NOMI). NOMI pertenece a una familia de enfermedades conocidas como…
Su americano promedio probablemente piensa en adultos de mediana edad o ancianos cuando escuchan la palabra artritis. Lo triste es que realmente no se les puede culpar. Tome este comercial…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
This is part 2 of Marian'a journey, click here for Part 1. After some genetic testing, we eliminated the most common, Cruzons Syndrome, so we proceeded with some more testing.…
En la famosa adaptación cinematográfica del musical, Cabaret, Sally Bowles y el maestro de ceremonias realizó las famosas líneas de "El dinero hace girar el mundo." Aunque es obvio en…
Dear Ehlers-Danlos Syndrome, I have been living with you my whole life, but you started to show your ugly face 5 years ago. And during all that time I couldn’t…
What is a strawfie? A selfie (picture of yourself) while breathing through a straw. You've met Cassie Hawthorne in Patient Worthy's write up Model with Cystic Fibrosis Bringing Awareness to Disease earlier…
Are prime-time TV medical-dramas truly distorting patient expectations? We don't think so. Do you? Medical dramas aren't the only ones in today's television circuit that are incorporating rare diseases into plot lines…
PW Contributor and caregiver Gloria Szanto, shares with us how she is able to live a healthy, family-filled, yet busy life while caregiving for her husband. Hi, my name is…
I LOVE pancakes but part of having chronic Lyme means I have a pretty restricted diet. Additionally, I almost never have energy so I need something that will give me a…
El hecho de que Burger King abandonó "hazlo a tu manera" como consigna no significa que tu tengas que hacerlo! Una vez diagnosticado, viviendo con inmunodeficiencia variable común (ICV) requiere…
From the comfort of the @PatientWorthy couch, we caught another RARE feature on TV! Chicago Fire Fans Won't See Otis Fighting Fires Until His Platelets are Balanced A few episodes…
La edad de las máquinas, estamos en ella! La tecnología se ha hecho cargo. Hace algunas décadas, cuando alguien hablaba de la tecnología, pensado en Orwell novela 1984, las películas…
En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…
Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…
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