Patient Worthy Contributor – Page 58

source: pixabay.com

When Mom is Sick

Post author:Patient Worthy Contributor
Post published:May 31, 2016
Post category:Rare Disease Sjogren's Syndrome

The old saying goes "When momma ain't happy, ain't nobody happy." And we all laugh a bit because there is a trace of truth in it. But what about when momma…

Perdiendo el tren acerca del AEH

Post author:Patient Worthy Contributor
Post published:May 31, 2016
Post category:HAE Rare Disease

Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…

MDS Patient & Family Forum June 25th in Birmingham, Alabama

Post author:Patient Worthy Contributor
Post published:May 30, 2016
Post category:Myelodysplastic syndromes

Share this flyer with anyone you know suffering from myelodysplastic syndromes (MDS).

Photo Credit: rarediseaseday.org logo

Las manos elocuentes dicen mas que las palabras en este video sobre las Enfermedades Raras

Post author:Patient Worthy Contributor
Post published:May 30, 2016
Post category:Rare Disease

Manos amigas pueden hacer cosas realmente sorprendentes. Eurodis, los campeones del Día de las Enfermedades Raras, demuestran esa idea en su vídeo sobre el Día de las Enfermedades Raras del…

Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Cystic Fibrosis Ehlers-Danlos Syndrome Rare Disease

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…

Our I Run 4 Experience

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Rare Disease

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…

How This Young Woman is Fighting 8 Years of Lyme Disease

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Lyme Disease Rare Disease

“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…

Mariana’s Medical Journey Part 3: Embracing Difference

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Pfeiffer Syndrome Rare Disease

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…

Raise Your Hand If You’re Sure

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Lyme Disease Rare Disease

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…

Source: pixabay.com

este paciente con espondilitis anquilosante nos enseña que la locura puede ser buena

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Ankylosing Spondylitis Rare Disease

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…

shutterstock

NOMI alias CINCA

Post author:Patient Worthy Contributor
Post published:May 26, 2016
Post category:CAPS Neonatal onset multisystem inflammatory disease Rare Disease

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…

What You Need to Know About Cystic Fibrosis

Post author:Patient Worthy Contributor
Post published:May 26, 2016
Post category:Cystic Fibrosis Rare Disease

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'…

Team GB Trampoline Squad Highlight the Difficulty of Living with Cystic Fibrosis

Post author:Patient Worthy Contributor
Post published:May 25, 2016
Post category:Cystic Fibrosis Rare Disease

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…

Pfizer en proceso de licitación con el fabricante sueco de tratamiento para el NOMI

Post author:Patient Worthy Contributor
Post published:May 24, 2016
Post category:CAPS Neonatal onset multisystem inflammatory disease Rare Disease

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…

A flashmob broke out during the 2014 Walk. Source: Facebook

Limitada en la Infancia, observe como es de extraordinaria de todos modos

Post author:Patient Worthy Contributor
Post published:May 23, 2016
Post category:Ankylosing Spondylitis Rare Disease

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

Post author:Patient Worthy Contributor
Post published:May 20, 2016
Post category:CVID Rare Disease

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.…

Pixabay

How Acromegaly and His Mother-in-Law Helped Rob

Post author:Patient Worthy Contributor
Post published:May 20, 2016
Post category:Acromegaly Rare Disease

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.…

Mariana’s Medical Journey Part 2: A Diagnosis

Post author:Patient Worthy Contributor
Post published:May 20, 2016
Post category:Pfeiffer Syndrome Rare Disease

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.…

Source: www.pixabay.com

Las grandes empresas farmacéuticas se desentendieron de ellos. Este equipo enfocado en el AEH les dio esperanza

Post author:Patient Worthy Contributor
Post published:May 19, 2016
Post category:HAE

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: A Letter From Your Host

Post author:Patient Worthy Contributor
Post published:May 19, 2016
Post category:Ehlers-Danlos Syndrome Rare Disease

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…

A Strawfie is a Selfie While Breathing Through a Straw for Cystic Fibrosis Awareness

Post author:Patient Worthy Contributor
Post published:May 19, 2016
Post category:Cystic Fibrosis Rare Disease

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…

Primetime Drama Features Sickle Cell Disease

Post author:Patient Worthy Contributor
Post published:May 18, 2016
Post category:Rare Disease Sickle cell anemia

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…

Maintaining a Balanced Lifestyle as a Caregiver

Post author:Patient Worthy Contributor
Post published:May 18, 2016
Post category:Myelodysplastic syndromes Rare Disease

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…

Pixabay

Easiest Gluten-Free, Dairy-Free Energy Pancakes

Post author:Patient Worthy Contributor
Post published:May 18, 2016
Post category:Lyme Disease Rare Disease

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…

“hazlo a tu manera” – tu tratamiento para la inmunodeficiencia variable común (ICV)

Post author:Patient Worthy Contributor
Post published:May 17, 2016
Post category:CVID Rare Disease

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…

When Mom is Sick

Perdiendo el tren acerca del AEH

MDS Patient & Family Forum June 25th in Birmingham, Alabama

Las manos elocuentes dicen mas que las palabras en este video sobre las Enfermedades Raras

Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

Our I Run 4 Experience

How This Young Woman is Fighting 8 Years of Lyme Disease

Mariana’s Medical Journey Part 3: Embracing Difference

Raise Your Hand If You’re Sure

este paciente con espondilitis anquilosante nos enseña que la locura puede ser buena

NOMI alias CINCA

What You Need to Know About Cystic Fibrosis

Team GB Trampoline Squad Highlight the Difficulty of Living with Cystic Fibrosis

Pfizer en proceso de licitación con el fabricante sueco de tratamiento para el NOMI

Limitada en la Infancia, observe como es de extraordinaria de todos modos

5 Preguntas que estás cansado de oir cuando tienes ICV

How Acromegaly and His Mother-in-Law Helped Rob

Mariana’s Medical Journey Part 2: A Diagnosis

Las grandes empresas farmacéuticas se desentendieron de ellos. Este equipo enfocado en el AEH les dio esperanza

Dear Ehlers-Danlos Syndrome: A Letter From Your Host

A Strawfie is a Selfie While Breathing Through a Straw for Cystic Fibrosis Awareness

Primetime Drama Features Sickle Cell Disease

Maintaining a Balanced Lifestyle as a Caregiver

Easiest Gluten-Free, Dairy-Free Energy Pancakes

“hazlo a tu manera” – tu tratamiento para la inmunodeficiencia variable común (ICV)

Let’s Work Together!

Keep Up to Date

Learn More