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…
I had a sneaking suspicion that I was sick before any doctors diagnosed me with chronic, late-stage Lyme disease. The following playlist pretty much spells out my journey from feeling…
Es a través del arte que Rebecca Zook gestiona los desafíos físicos y emocionales de vivir con una enfermedad crónica. Después de 3 años de ver decenas de médicos especialistas,…
Can the Protein in Your Urine Detect Lyme Disease? Living with Lyme is tough, but diagnosing Lyme disease is one of the biggest challenges for doctors. Peeing in a cup to assist in…
We have all heard about how LIFESTYLE FACTORS can drastically EFFECT HORMONAL BALANCE and ultimately IMPACT WEIGHT STATUS. We read tips and tricks from fitness gurus on social media all…
1. Leonard Trask Trask sufrió un incidente de equitación terrible cuando tenia unos 20 años que condujo a la inmovilidad y la deformación de su columna vertebral. Él entregó su vida…
Starting June 13th, better health will be delivered right to your e-mail front door - if you sign up! Seriously, 14 days of small, easy changes that result in a…
As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…
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