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Primary Sclerosing Cholangitis Can Do a Number on Your Liver

• Post author:Erica Zahn
• Post published:February 3, 2017
• Post category:Primary sclerosing cholangitis/Rare Disease

Primary sclerosing cholangitis, or PSC, is a chronic progressive disease that damages the bile ducts. And, if you didn't know, bile is a liquid that assists the body in the…

Continue Reading Primary Sclerosing Cholangitis Can Do a Number on Your Liver

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Gaucher Disease: 21st Century People Share Their Experiences

• Post author:Erica Zahn
• Post published:February 3, 2017
• Post category:Gaucher Disease/Rare Disease

What if you were born with an enzyme efficiency that prevented your body from breaking down lipids? Then you are probably one in 50,000 people who has Gaucher disease. And…

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How to Be Popular in the GN World

• Post author:Sabina Kennedy
• Post published:February 2, 2017
• Post category:Glomerulonephritis/Rare Disease

It is more blessed to give than to receive, and one man who lives with glomerulonephritis (GN) knows all too well how helping people and doing a good deed out…

Continue Reading How to Be Popular in the GN World

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This Man is Proof: You Can Live with Cystic Fibrosis in the Golden Years

• Post author:PW Blogger
• Post published:February 2, 2017
• Post category:Cystic Fibrosis/Rare Disease

Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…

Continue Reading This Man is Proof: You Can Live with Cystic Fibrosis in the Golden Years

Fred and me. Fred helped diagnose me with dystonia many years ago before anyone else knew what it was and I was still doctor shopping. He has dystonia also.

Self-Empowerment Tips for Healthy Living

• Post author:Tom Seaman
• Post published:February 2, 2017
• Post category:Dystonia/Rare Disease

When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…

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Every pregnant woman should know about this SCID testing.

Lo que toda mujer embarazada debe saber sobre exámenes del recién nacido

• Post author:Patient Worthy Contributor
• Post published:February 2, 2017
• Post category:Primary Immunodeficiencies/Rare Disease/SCID

Cuando me uní a otros millones de fans obsesionados que veían lo que ha sido la popular episodio "Bubble Boy" en Seinfeld en 1992, no tenía ni idea de que…

Continue Reading Lo que toda mujer embarazada debe saber sobre exámenes del recién nacido

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When MG Strikes… Learn More at the March Conference!

• Post author:Erica Zahn
• Post published:February 1, 2017
• Post category:Myasthenia Gravis/Rare Disease

Myasthenia gravis is a chronic neurological autoimmune disorder that causes weakening of the voluntary muscles in the body. The most frequently affected muscles control eyelid movement, swallowing, and facial expression. In the…

Continue Reading When MG Strikes… Learn More at the March Conference!

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African Heritage and Health Week Recipes for Your Rare Disease Diet

• Post author:Patient Worthy Contributor
• Post published:February 1, 2017
• Post category:Rare Disease

February is Black History month and for the first week, Old Ways, a site dedicated to promoting good health through cultural foods, is celebrating with health foods! If you're like…

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CF Siblings: It’s Complicated, But You Can Help This Family

• Post author:PW Blogger
• Post published:February 1, 2017
• Post category:Cystic Fibrosis/Rare Disease

There comes the time when families ask the question,"When should we have another baby?" After having one child, and knowing the responsibilities that you have to take on, it can…

Continue Reading CF Siblings: It’s Complicated, But You Can Help This Family

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Two Centuries of Research Pays off for Eisenmenger Syndrome Patient

• Post author:Erica Zahn
• Post published:February 1, 2017
• Post category:Eisenmenger syndrome/Rare Disease

In 1818, a novel was anonymously published in London by an 18-year-old author. It told the story of a scientist who was determined to bring a cadaver back to life…

Continue Reading Two Centuries of Research Pays off for Eisenmenger Syndrome Patient

This little girl with dystonia needs your help!

Esta niña con distonía necesita tu ayuda en este momento

• Post author:Patient Worthy Contributor
• Post published:February 1, 2017
• Post category:Dystonia/Rare Disease

¿Cuánto cree usted que la media niña de cinco años de edad, pesa? De acuerdo con kidshealth.org, la respuesta es aproximadamente 45 libras. Ahora, ¿cuánto cree usted que una silla…

Continue Reading Esta niña con distonía necesita tu ayuda en este momento

Rare Disease Day 2017: Are You Doing Your Part?

• Post author:Patient Worthy Contributor
• Post published:January 31, 2017
• Post category:Rare Disease

Tuesday, February 28th is Rare Disease Day. And while we will be at #RDDNIH on the 27th, you can participate in Rare Disease Day from anywhere in the U.S.! Check out some…

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How Are You Contributing to National Wear Red Day® this Friday?

• Post author:Patient Worthy Contributor
• Post published:January 31, 2017
• Post category:Rare Disease

This Friday, February third is The American Heart Association's National Wear Red Day® for women's heart health! It will mark the 15th anniversary since the inception of this fundraiser. According the…

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A Joint Venture for New Treatment of Rare Pediatric Epilepsies!

• Post author:Rebekah
• Post published:January 31, 2017
• Post category:Lennox-Gastaut syndrome/Rare Disease

Pharmaceutical companies Takeda and Ovid have agreed to work together to develop a new drug for rare pediatric epilepsies. The continued development of Takeda’s compound TAK-935 will be shared by…

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NASH and NAFLD: The Truth Behind Real Science Supports Permanent Weight Loss

• Post author:Alisha Stone
• Post published:January 31, 2017
• Post category:Nonalcoholic steatohepatitis/Rare Disease

Lying in bed this spectacularly beautiful fall Sunday morning—with my gently-snoring cat, Thelma, I feel so relaxed gazing out the window, watching ruby red leaves fluttering in the wind. But…

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Looking Back: Allen’s Story Part 1- A Soldier’s Suffering

• Post author:Rebekah
• Post published:January 31, 2017
• Post category:Ankylosing Spondylitis/Rare Disease

We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…

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Legislation for rare diseases like Ehlers-Danlos Syndrome is in the works in Conneticut!

Los legisladores y expertos médicos se unen para enfermedades raras

• Post author:Patient Worthy Contributor
• Post published:January 31, 2017
• Post category:Ehlers-Danlos Syndrome/Rare Disease

Si usted vive en Connecticut, y sucede que tiene una enfermedad rara, se están haciendo esfuerzos para ayudar a que su voz sea escuchada. Cuando usted es uno de muy…

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Why the World Needs Primary Sclerosing Cholangitis Heroes

• Post author:Sabina Kennedy
• Post published:January 30, 2017
• Post category:Primary sclerosing cholangitis/Rare Disease

Nice guys finish last? Hardly. Especially if we’re talking about Vanessa Smith, a mother of six, and Peter Brouwer, a father living with primary sclerosing cholangitis (PSC) who needed a…

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Which Would You Rather? Paleo, Juicing, or Plant-Based Diets for JIA/RA

• Post author:Alisha Stone
• Post published:January 30, 2017
• Post category:Juvenile idiopathic arthritis/Rare Disease

Hold the phone! Hold. Wait. Uhhhh am I reading this right? There is a mom, who seems to have good intentions, a mom who clearly loves her young daughter who…

Continue Reading Which Would You Rather? Paleo, Juicing, or Plant-Based Diets for JIA/RA

Heritable Disorder Advisory Committee Webinar is Next WEEK!

• Post author:Patient Worthy Contributor
• Post published:January 30, 2017
• Post category:Rare Disease/Tyrosinemia

Tyrosinemia is an inherited metabolic disorder that inhibits the body’s ability to process or break down essential amino acids found in common foods that are consumed. Tyrosinemia Type 1 attacks…

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1st MDS Forum of 2017 Coming Soon!

• Post author:Rebekah
• Post published:January 30, 2017
• Post category:Myelodysplastic syndromes/Rare Disease/Timely

The first MDS patient forum of 2017 is fast approaching! The forum is sponsored by the MDS Foundation is completely free for you! Just don't forget to register. The event…

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3 Tips to Avoid Feeling Tongue-Tied at Your Next Appointment

• Post author:Kiki Jones
• Post published:January 30, 2017
• Post category:Primary sclerosing cholangitis/Rare Disease

I can honestly say that I have never gone to a doctor’s appointment and remembered everything I wanted to ask—not even when the appointment is the most basic of physicals.…

Continue Reading 3 Tips to Avoid Feeling Tongue-Tied at Your Next Appointment

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¿Es usted tan “loco”, como esta chica con POTS?

• Post author:Patient Worthy Contributor
• Post published:January 30, 2017
• Post category:Dysautonomia/POTS/Rare Disease

Meet Emily Deaton, de 21 años, de Mechanicsville, Virginia. Al igual que muchas personas con enfermedades invisibles, el viaje de Emily a un diagnóstico preciso era más de una pesadilla…

Continue Reading ¿Es usted tan “loco”, como esta chica con POTS?

Disease and Depression. What this woman with EDS can teach all of us in the rare disease community.

Esta mujer están cambiando el mundo

• Post author:Patient Worthy Contributor
• Post published:January 29, 2017
• Post category:Ehlers-Danlos Syndrome/Rare Disease

La enfermedad y la depresión. Con demasiada frecuencia, después de haber sido diagnosticado con una enfermedad crónica, los pacientes se dan por vencidos. Se retiran. Ellos dejan de intentarlo. Ellos…

Continue Reading Esta mujer están cambiando el mundo

Finally! Healthy and easy dessert you can eat with chronic illness.

Un postre fácil y saludable que usted puede comer con enfermedad crónica

• Post author:Patient Worthy Contributor
• Post published:January 28, 2017
• Post category:Dysautonomia/POTS/Rare Disease

Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…

Continue Reading Un postre fácil y saludable que usted puede comer con enfermedad crónica