rare disease – Page 202 – Patient Worthy

Life with Dysautonomia Part 1

Post author:Patient Worthy Contributor
Post published:November 25, 2015
Post category:Dysautonomia POTS Rare Disease

I may look "fine" to you on the outside but what I'm experiencing on the inside is not "fine". I have a couple of different forms of an incurable invisible…

5 Crucial Faux “Paws” to Avoid With Service Dogs

Post author:Alisha Stone
Post published:November 25, 2015
Post category:POTS Rare Disease

Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…

Meet this Powerful Woman Starting a Conversation About POTS

Post author:Ronald Ledsen
Post published:November 24, 2015
Post category:Dysautonomia POTS Rare Disease

Hey, how’d you like to be able to wear shorts anytime you want, even in the dead of winter? Sounds good, right? How about being able to eat as much…

What are you thankful for this Thanksgiving?

What Are You Thankful For?

Post author:Patient Worthy Contributor
Post published:November 23, 2015
Post category:Myasthenia Gravis Rare Disease

Tis the season when gratitude is in the air (can you smell it?). Wait, that may be the pumpkin pie. Anyway, Thanksgiving is a time of reflection. A time where…

Meet one of the newest IDF members with CVID.

This IDF Teen is Going to Make a Splash in the IDF Community

Post author:James Ernest Cassady
Post published:November 20, 2015
Post category:CVID Primary Immunodeficiencies Rare Disease

Meet one of the latest Immune Deficiency Foundation (IDF) Teen Council members, Baylee Gregory! Baylee was diagnosed with Combined Variable Immune Deficiency (CVID). Though any diagnosis is difficult, Baylee is…

What does lab work even mean?

Unraveling the Mystery of the Lab Report

Post author:Ronald Ledsen
Post published:November 20, 2015
Post category:CGD CVID Primary Immunodeficiencies Rare Disease SCID

If you’re a regular PatientWorthy reader, chances are you’ve been on the receiving end of this loaded statement from at least one doctor: “We’re going to need to run some…

4 Million people with Sjogren's Syndrome and it's still hard to diagnose.

4 Million People Affected By This Disease, What You Should Know

Post author:Lady Kehveen Abernathy
Post published:November 19, 2015
Post category:Rare Disease Sjogren's Syndrome

Why is it that a disease discovered 127 years ago still falls so low under the radar? Not just that, but a disease affecting 4 million people in the United…

Crees que TU tienes problemas? Una historia de gigantes

Post author:Alisha Stone
Post published:November 19, 2015
Post category:Acromegaly Español Rare Disease

Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…

Hero mom helps daughter tackle Bechet's disease.

Heroic Mom and Daughter Are Inspiring The World

Post author:Alisha Stone
Post published:November 19, 2015
Post category:Behçet's Rare Disease

Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten! At the ripe…

Ten things you need to know about Ehlers-Danlos Syndrome

10 Things You Need to Know About Ehlers-Danlos Syndrome

Post author:Winnie Nash
Post published:November 19, 2015
Post category:Ehlers-Danlos Syndrome

With rare diseases, there’s often a lot of information that’s unknown or mysterious to the general public, patients, and even doctors. Ehlers-Danlos Syndrome (EDS) is a group of disorders that…

What Are the Invisible Struggles of Invisible Illness?

Post author:Kiki Jones
Post published:November 18, 2015
Post category:Rare Disease

"I’m tired of dying and I fear I’ll be dying for the rest of my life.” This is a powerful truth for anyone dealing day-to-day with a chronic condition, but…

If your child has a rare disease, you need to know about this broken system

Si su hijo tiene una enfermedad rara, lo que necesita saber sobre el abuso infantil médica

Post author:Farrah Fontaine
Post published:November 18, 2015
Post category:Dysautonomia POTS Rare Disease

Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…

How to Come Back If You’ve Lost Yourself to a Rare Disease

Post author:Winnie Nash
Post published:November 18, 2015
Post category:Complex Regional Pain Syndrome Rare Disease

After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the…

Watch out for pulmonary hypertension if you have sarcoidosis.

If You’ve Got Sarcoidosis, You Need to Know This

Post author:James Ernest Cassady
Post published:November 17, 2015
Post category:Rare Disease Sarcoidosis

For 90-95% of people living with sarcoidosis, the disease affects their lungs. As granulomas grow throughout the organs, they may experience coughing, chest pain, shortness of breath, and sometimes even…

The Simpsons accurately portray narcolepsy.

Doh! Narcolepsy Just Isn’t that Funny, Even Homer Simpson Agrees!

Post author:Erica Zahn
Post published:November 17, 2015
Post category:Narcolepsy Rare Disease

It's unfair, but Hollywood thinks narcolepsy is funny. Over and over, characters suffering from the rare neurological disorder are portrayed as buffoons, falling asleep face down in their chicken soup,…

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

Legislators and Medical Experts Team Up For Rare Diseases

Post author:Erica Zahn
Post published:November 17, 2015
Post category:Ehlers-Danlos Syndrome Rare Disease

If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard. When you're one in a very few, it…

What's in a name? Dysautonomia patients are finding out.

What’s in a Name? These Rare Disease Patients are Finding Out

Post author:Kiki Jones
Post published:November 17, 2015
Post category:Dysautonomia Rare Disease

Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…

For Man with Acromegaly, Big Record, Big Problems

Post author:James Ernest Cassady
Post published:November 16, 2015
Post category:Acromegaly Rare Disease

You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…

Brave boy battles TYR1

What Would You Do? Brave Boy’s Life Is On The Line

Post author:EmpatheticBadass
Post published:November 16, 2015
Post category:Rare Disease Tyrosinemia

When lives hang in the balance, should the needs of a few trump the bottom line? That question was all too real for one Australian mother, Shanna Druisi. As reported in…

Check out this new app for narcolepsy!

What’s App, Doc? Technology and Narcolepsy

Post author:James Ernest Cassady
Post published:November 16, 2015
Post category:Narcolepsy Rare Disease

It's no secret that people are more dependent on technology than ever. We've got computers in our cars, TVs on our phones, and WiFi on our airplanes. It shouldn't be…

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

How This Young Woman’s Double D’s Are Changing the World

Post author:Alisha Stone
Post published:November 16, 2015
Post category:Ehlers-Danlos Syndrome Rare Disease

Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…

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Are You As “Crazy” As This Girl with POTS?

Post author:EmpatheticBadass
Post published:November 13, 2015
Post category:Dysautonomia POTS Rare Disease

Meet Emily Deaton, 21, of Mechanicsville, Virginia. Like many people with invisible illnesses, Emily's journey to an accurate diagnosis was more of a nightmare than a dream. Emily has a disease of…

Every pregnant woman should know about this SCID testing.

What Every Pregnant Woman Should Know About Newborn Testing

Post author:Alisha Stone
Post published:November 13, 2015
Post category:Primary Immunodeficiencies Rare Disease SCID

When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…

This little girl with dystonia needs your help!

This Little Girl with Dystonia Needs Your Help Right Now

Post author:James Ernest Cassady
Post published:November 13, 2015
Post category:Dystonia Rare Disease

How much do you think the average five-year-old girl weighs? According to kidshealth.org, the answer is about 45 pounds. Now, how much do you think a wheelchair for that same…

Women of the Rare Disease World: SPEAK UP!

Post author:Erica Zahn
Post published:November 12, 2015
Post category:Complex Regional Pain Syndrome HAE Rare Disease

Here's the scenario: a woman and a man walk into the emergency room with the same symptoms. Both have terrible pain in their abdominal region. The man is immediately brought…

Life with Dysautonomia Part 1

5 Crucial Faux “Paws” to Avoid With Service Dogs

Meet this Powerful Woman Starting a Conversation About POTS

This IDF Teen is Going to Make a Splash in the IDF Community

Unraveling the Mystery of the Lab Report

4 Million People Affected By This Disease, What You Should Know

Crees que TU tienes problemas? Una historia de gigantes

Heroic Mom and Daughter Are Inspiring The World

What Are the Invisible Struggles of Invisible Illness?

Si su hijo tiene una enfermedad rara, lo que necesita saber sobre el abuso infantil médica

How to Come Back If You’ve Lost Yourself to a Rare Disease

If You’ve Got Sarcoidosis, You Need to Know This

Doh! Narcolepsy Just Isn’t that Funny, Even Homer Simpson Agrees!

Legislators and Medical Experts Team Up For Rare Diseases

What’s in a Name? These Rare Disease Patients are Finding Out

For Man with Acromegaly, Big Record, Big Problems

What Would You Do? Brave Boy’s Life Is On The Line

What’s App, Doc? Technology and Narcolepsy

How This Young Woman’s Double D’s Are Changing the World

Are You As “Crazy” As This Girl with POTS?

What Every Pregnant Woman Should Know About Newborn Testing

This Little Girl with Dystonia Needs Your Help Right Now

Women of the Rare Disease World: SPEAK UP!

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

Let’s Work Together!

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