Rare Disease – Page 278 – Patient Worthy

CAPS: When Genes Are Altered

Post author:James Stone
Post published:November 30, 2015
Post category:CAPS Rare Disease

Let's take a trip back in time to the year 2001: A new president is sworn into office; the Global War on Terror begins; and a discovery is made on…

Meme Monday: Our 5 Favorite Holiday Memes to Start the Season

Post author:Rebekah
Post published:November 30, 2015
Post category:Rare Disease

The family has left town. The leftovers are dwindling. And yes, carols have once again dominated the airways. All that means is.... Thanksgiving was awesome, but it's Christmahanakwanzika time! But…

A NOMID Drug Changed This Little Girl’s Life

Post author:PW Blogger
Post published:November 30, 2015
Post category:CAPS Neonatal onset multisystem inflammatory disease Rare Disease

Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…

I got a fever, and the only prescription for FCAS is...

I Got A Fever, And The Only Prescription for FCAS Is…

Post author:James Stone
Post published:November 30, 2015
Post category:CAPS FCAS Rare Disease

If you know the '90's with some clue about pop culture, the start of this headline means something to you. But "FCAS"? Maybe not... At the close of the 90's,…

We Need A Hero!

This is “MARVEL” (not a comic): Molecule May Treat Muckle-Wells Disease

Post author:James Stone
Post published:November 30, 2015
Post category:CAPS Muckle-Wells Syndrome Rare Disease

When I see "Marvel" and a picture like the one below... ...I see the makings of a superhero! "A team of researchers at Trinity College Dublin has unearthed what they…

WeekendRoundUp 11.27.2015

Editor’s Choice Weekend Roundup: It’s Thanksgiving Week!

Post author:Patient Worthy Contributor
Post published:November 27, 2015
Post category:Dysautonomia POTS Rare Disease

Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…

Exhibit Puts the Powerful Faces of Rare Disease in the Spotlight

Post author:Kiki Jones
Post published:November 27, 2015
Post category:Rare Disease

Did you know that there are over 7,000 rare diseases, and 1 in 10 Americans has one? When you're part of a small patient population, it's hard to get noticed.…

Why Is This Woman So Upbeat in the Face of EDS?

Post author:Ronald Ledsen
Post published:November 27, 2015
Post category:Dysautonomia Ehlers-Danlos Syndrome Rare Disease

If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…

CRPS drug in Italy could help relieve pain. Pixabay

New Drug May Help the Badass Pain Warriors of CRPS

Post author:Winnie Nash
Post published:November 27, 2015
Post category:Complex Regional Pain Syndrome Rare Disease

Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare. Well,…

Life with Dysautonomia Part 2

Post author:Patient Worthy Contributor
Post published:November 26, 2015
Post category:Dysautonomia POTS Rare Disease

For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…

Doctors, Nurses and Being a Patient

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

Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…

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…

How to line your stomach in time for Thanksgiving Pixabay

How to Protect Your Stomach This Thanksgiving

Post author:Patient Worthy Contributor
Post published:November 24, 2015
Post category:POTS Rare Disease

As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…

Meme Monday: Bring out the Turkeys, It’s Thanksgiving!

Post author:Rebekah
Post published:November 23, 2015
Post category:Rare Disease

Macy's Thanksgiving Day Parade, time with family, food, Charlie Brown, and yes, more food. What else could we be talking about but.... Thanksgiving! I'm sure you have plenty to be…

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

A Healthy, Easy Dessert You CAN Eat With Chronic Illness

Post author:Patient Worthy Contributor
Post published:November 23, 2015
Post category:Dysautonomia POTS Rare Disease

I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…

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…

5 Razones porque pinchándote con una aguja te hará sonreír

Post author:Rebekah
Post published:November 23, 2015
Post category:HAE Rare Disease

A nadie le gustan las vacunas A nadie le gustan los ataques de angioedema hereditario. No es ningún secreto que las personas que están sufriendo un ataque de AEH no…

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…

This Honest Mom Doesn’t Want You to Be Ashamed of Your Rare Disease

Post author:Rebekah
Post published:November 19, 2015
Post category:CAPS Dysautonomia FCAS POTS Rare Disease

Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. Patient Worthy got the privilege of hearing,…

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CAPS: When Genes Are Altered

Meme Monday: Our 5 Favorite Holiday Memes to Start the Season

A NOMID Drug Changed This Little Girl’s Life

I Got A Fever, And The Only Prescription for FCAS Is…

This is “MARVEL” (not a comic): Molecule May Treat Muckle-Wells Disease

Exhibit Puts the Powerful Faces of Rare Disease in the Spotlight

Why Is This Woman So Upbeat in the Face of EDS?

New Drug May Help the Badass Pain Warriors of CRPS

Life with Dysautonomia Part 2

Doctors, Nurses and Being a Patient

Life with Dysautonomia Part 1

5 Crucial Faux “Paws” to Avoid With Service Dogs

Meet this Powerful Woman Starting a Conversation About POTS

How to Protect Your Stomach This Thanksgiving

Meme Monday: Bring out the Turkeys, It’s Thanksgiving!

A Healthy, Easy Dessert You CAN Eat With Chronic Illness

5 Razones porque pinchándote con una aguja te hará sonreír

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

This Honest Mom Doesn’t Want You to Be Ashamed of Your Rare Disease

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

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