Rare Disease – Page 251 – Patient Worthy

Let’s Hear It For The #Raredads

Post author:Kristen Lord
Post published:June 13, 2016
Post category:Rare Disease

If you know or are a rare dad who is the parent of a child with a rare disease, or are a rare dad who has a rare disease, tell your story! Shed…

Pixabay

What Can You Do About High Cortisol levels?

Post author:Patient Worthy Contributor
Post published:June 13, 2016
Post category:Cushing Disease Rare Disease

Living with Cushing's Disease: How Healthy Eating and Exercise Will Help Cushing's disease is a condition that occurs when there is a high amount of cortisol in your blood. This level…

Practical Info About PI Disorders

Post author:PW Blogger
Post published:June 13, 2016
Post category:CGD CVID Primary Immunodeficiencies Rare Disease SCID

There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…

How to Explain Your Rare Disease to a New Doctor

Post author:PW Blogger
Post published:June 13, 2016
Post category:Behçet's Rare Disease

Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist. Sometimes it seems like you are explaining yourself and Behcet's…

How To Have “Wild” Nights With Behçet’s Disease

Post author:Farrah Fontaine
Post published:June 13, 2016
Post category:Behçet's Rare Disease

When you have a chronic illness, "wild" nights tend to become a thing of the past. No more late nights at the club, hanging out until midnight in the middle…

bebés diminutos y la espondilitis anquilosante: un estudio en la UE

Post author:Patient Worthy Contributor
Post published:June 13, 2016
Post category:Ankylosing Spondylitis Rare Disease

La espondilitis anquilosante (A. S. por sus siglas en ingles) es una forma de artritis que afecta a la columna, aunque otras articulaciones pueden participar. Que causa inflamación de las…

Editor’s Choice: An Instagramable Week of Selfies, Fitness, Twins and Adolescence

Post author:Patient Worthy Contributor
Post published:June 10, 2016
Post category:Cystic Fibrosis Dystonia Lyme Disease Rare Disease

Happy Friday Patient Worthians! Just because Cystic Fibrosis and Lyme Disease Awareness Month is over, doesn't mean we won't stop fighting the good fight for spreading awareness about these diseases! We…

5 Ways You Know You’re Crushing Your Rare Disease

Post author:Farrah Fontaine
Post published:June 10, 2016
Post category:Rare Disease

When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…

For the Food Lover: A Bangin’ Tyrosinemia-Friendly Recipe

Post author:Winnie Nash
Post published:June 10, 2016
Post category:Rare Disease Tyrosinemia

Low-fat, low-tyrosine recipes don’t mean you have to go light on the flavor. Because children who have to adhere to a tyrosinemia diet cannot eat foods that include meat, poultry,…

On A Scale From Kim K to 10, How Well Do You Know Your Rare Disease?

Post author:Lady Kehveen Abernathy
Post published:June 10, 2016
Post category:Acromegaly Behçet's Dysautonomia HAE Homozygous Familial Hypercholesterolemia POTS Rare Disease

Kim Kardashian: one of the most famous women in the world. Why, you ask? I honestly don't know. But due to that fact that so many people know and seem to…

DarkoStojanovic / Pixabay

Hombre de 82 años con espondilitis anquilosante camina después de su operación

Post author:Patient Worthy Contributor
Post published:June 10, 2016
Post category:Ankylosing Spondylitis Rare Disease

Los médicos de Global Hospital en Mumbai, India, han logrado una hazaña poco común en la cirugía espinal. Por primera vez, un experto equipo de cirujanos realizaron la cirugía de…

Pixabay

If You’re a Man With AS, You Need to Read This Study

Post author:Ronald Ledsen
Post published:June 9, 2016
Post category:Ankylosing Spondylitis Rare Disease

Are you a guy with ankylosing spondylitis (AS)? Then you need to know about this study. It suggests that men with AS are at a higher risk of dying from…

Pixabay

IDIOM: It’s Not What You’re Thinking

Post author:Erica Zahn
Post published:June 9, 2016
Post category:Rare Disease

What if you had a super-rare disease and thought you were the only one on the planet who had it? What if your medical team suspected you might be right about…

Ankylosing Spondylitis Drug Could Do More Than Help AS

Post author:James Ernest Cassady
Post published:June 9, 2016
Post category:Ankylosing Spondylitis Rare Disease

A year ago, Novartis let people know that its drug, secukinumab, had shown positive results in a Phase III study for the treatment of ankylosing spondylitis. Now, the same drug could…

Source: Pixabay.com

How is Ehlers-Danlos Syndrome Like Big Boobs? They Both Need Support!

Post author:EmpatheticBadass
Post published:June 9, 2016
Post category:Ehlers-Danlos Syndrome Rare Disease

Having a rare illness often makes people feel isolated and alone. When you feel as if no one understands where you’re coming from—or worse yet, when friends and family act…

Activadores del AEH: ¿Se pueden evitar?

Post author:Patient Worthy Contributor
Post published:June 9, 2016
Post category:HAE Rare Disease

Muchas personas con angioedema hereditario (AEH) le dirá que realmente no están seguros de qué causa sus ataques, pero pueden identificar algunos factores desencadenantes comunes, tales como el estrés, la…

Estos hermanos comparten el mismo desorden misterioso, y les esta amenazando la vida

Post author:Patient Worthy Contributor
Post published:June 8, 2016
Post category:CVID Rare Disease

Su hermano dijo que el diagnóstico era imposible; Ella no estaba tan segura En febrero de 2006, Sheryl Stein, de Arlington, Virginia, sabía que algo estaba mal. Ella sufría de…

[Source: Pixabay.com]

Hereditary Angioedema Presenting as Recurrent Acute Pancreatitis

Post author:James Ernest Cassady
Post published:June 8, 2016
Post category:HAE Rare Disease

2006: "HAE is almost never suspected as a potential cause of acute pancreatitis." - PubMed.gov 2007: "Pancreatitis is rarely a complication of an acute HAE attack." - The Journal of…

[Source: pixabay.com]

Did You Walk Your AS Off on Ankylosing Spondylitis Day?

Post author:Donald Blake
Post published:June 8, 2016
Post category:Rare Disease

C’mon! Get your friends moving and start walking. We’re taking steps to cure the world of a painful spine disease that can afflict its victims in early adulthood. May 7th…

La vida con AEH: 5 cosas que puedes hacer para preparar a tu hijo para ir a la escuela

Post author:Patient Worthy Contributor
Post published:June 7, 2016
Post category:HAE Rare Disease

R (more…)

Pixabay

Georgetown Woman Finds Support After Living with Myasthenia Gravis

Post author:Ronald Ledsen
Post published:June 7, 2016
Post category:Myasthenia Gravis Rare Disease

For Deborah Cooper, getting diagnosed with myasthenia gravis was the easy part. Everything that spun out of that diagnosis was what really turned her life upside down. It started innocently…

Pixabay

Living with Myasthenia Gravis: Video Review

Post author:James Ernest Cassady
Post published:June 7, 2016
Post category:Myasthenia Gravis Rare Disease

What's it like to live with myasthenia gravis (MG)? Let Olivia Truncale tell you: The 19-year-old college sophomore was diagnosed just over two years ago, shortly after her legs gave…

Helpful Suggestions or Harsh Judgement? Living with Rare Disease

Post author:Tom Seaman
Post published:June 7, 2016
Post category:Dystonia Rare Disease

While I truly believe that people are well-intentioned, their opinions and comments often miss the mark when it comes to what we experience living with dystonia, or any other chronic…

Que duele más que una bola rápida a las costillas? Un diagnóstico de espondilitis anquilosante

Post author:Patient Worthy Contributor
Post published:June 6, 2016
Post category:Ankylosing Spondylitis Rare Disease

Viviendo el sueño como un futuro de béisbol Destacado, Franklin Gutiérrez, alias "Guti" estaba en la cima del mundo. En 2000 los Indios de Cleveland firmaron al agente libre aficionado…

Misdiagnosed Woman Endures 7 Painful Years of Wrong Treatment

Post author:PW Blogger
Post published:June 6, 2016
Post category:Dysautonomia Ehlers-Danlos Syndrome POTS Rare Disease

Honestly, this is a crazy story-- heartbreaking, too. A young woman was told she had lupus, and spent the next seven grueling years enduring treatment, including chemotherapy and steroids, for a…

Let’s Hear It For The #Raredads

What Can You Do About High Cortisol levels?

Practical Info About PI Disorders

How to Explain Your Rare Disease to a New Doctor

How To Have “Wild” Nights With Behçet’s Disease

bebés diminutos y la espondilitis anquilosante: un estudio en la UE

Editor’s Choice: An Instagramable Week of Selfies, Fitness, Twins and Adolescence

For the Food Lover: A Bangin’ Tyrosinemia-Friendly Recipe

On A Scale From Kim K to 10, How Well Do You Know Your Rare Disease?

Hombre de 82 años con espondilitis anquilosante camina después de su operación

If You’re a Man With AS, You Need to Read This Study

IDIOM: It’s Not What You’re Thinking

Ankylosing Spondylitis Drug Could Do More Than Help AS

Activadores del AEH: ¿Se pueden evitar?

Estos hermanos comparten el mismo desorden misterioso, y les esta amenazando la vida

Hereditary Angioedema Presenting as Recurrent Acute Pancreatitis

Did You Walk Your AS Off on Ankylosing Spondylitis Day?

La vida con AEH: 5 cosas que puedes hacer para preparar a tu hijo para ir a la escuela

Georgetown Woman Finds Support After Living with Myasthenia Gravis

Living with Myasthenia Gravis: Video Review

Helpful Suggestions or Harsh Judgement? Living with Rare Disease

Que duele más que una bola rápida a las costillas? Un diagnóstico de espondilitis anquilosante

Misdiagnosed Woman Endures 7 Painful Years of Wrong Treatment

Let’s Work Together!

Keep Up to Date

Learn More