Rare Disease – Page 250 – Patient Worthy

New Hope for People Who Have IPF

Post author:EmpatheticBadass
Post published:June 28, 2016
Post category:IPF Rare Disease

“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.” Jo was one of…

It’s not Cheap to be Chronically Ill

Post author:Rebekah
Post published:June 28, 2016
Post category:Rare Disease

Not only is a chronic illness always hanging over your head because of it's cost to your health, your social life, and overall well-being, most times it also takes it's…

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The Really Amazing World of Human Genomes Will Stop Misdiagnosis

Post author:Erica Zahn
Post published:June 28, 2016
Post category:GLUT1 DS Rare Disease

In every great mystery novel, there's a code that needs to be cracked so the protagonist can triumph in the end. When it comes to medicine, that code is the…

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Dysautonomia Really Puts a Drag on Your Day

Post author:Erica Zahn
Post published:June 28, 2016
Post category:Dysautonomia POTS Rare Disease

In order to learn about something new, I need to know what the words describing the illness mean. If you look at the word "dysautonomia," and have never run across…

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This Amazing Little Boy Smiles in the Face of PH

Post author:Erica Zahn
Post published:June 28, 2016
Post category:pulmonary arterial hypertension Rare Disease

On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…

There’s a Quiet Courage in Chronic Illness

Post author:Rebekah
Post published:June 27, 2016
Post category:Rare Disease

Take a deep breath and know that even if other can't see it, your day, living with chronic illness, has been a battle. Every part of today has been a…

Unfamilar Reflections: An Acromegaly Story

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

I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…

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Here’s How You Can Celebrate MPS Awareness Day Every Day of the Year

Post author:Erica Zahn
Post published:June 27, 2016
Post category:Mucopolysaccharidosis Rare Disease Timely

MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…

June Is Really About The Snowflakes

Post author:Kristen Lord
Post published:June 27, 2016
Post category:Myasthenia Gravis Rare Disease

June is the awareness month for myasthenia gravis. People with MG are known as Snowflakes because no two snowflakes are exactly the same, just like no two people with MG…

Amyloidosis Foundation Summer 2016 NewsLetter

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

Amyloidosis is a rare disease that affects organs such as the heart, kidney, liver, the nervous system and more. While there is no cure, there are treatments and organizations that can help. Enter,…

6 Non-motor Symptoms of Parkinson’s Told Through GIFs

Post author:PW Blogger
Post published:June 27, 2016
Post category:Parkinson's Disease Rare Disease

Not many diseases affect the nervous system like Parkinson Disease. Millions of people had no idea what Parkinson Disease was, or how life-changing it could be, until one of America’s…

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This Girl with POTS Needs A Dog, Can We Make it Happen for Her?

Post author:Kiki Jones
Post published:June 27, 2016
Post category:Dysautonomia Rare Disease

It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas?

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

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…

Editor’s Choice: Amazing Young Adults, A Documentary and MG Awareness Month

Post author:Patient Worthy Contributor
Post published:June 24, 2016
Post category:Amyloidosis Cystic Fibrosis Myasthenia Gravis Rare Disease

Happy Father's Day Week Patient Worthians! We hope you celebrated your rare dads this week-- because they deserve it. As you know, it's Myasthenia Gravis Awareness Month so we are highlighting some new drug…

This MPS Teen Will Make You Want to Look In The Mirror

Post author:Winnie Nash
Post published:June 24, 2016
Post category:Mucopolysaccharidosis Rare Disease

Selfless. Alli Williams is selfless. The 17-year-old received an MPS I diagnosis as a baby. Unlike many kids with MPS, she was lucky enough to receive a bone marrow transplant--something she doesn't take lightly.…

What Do You Think About Your Rare Dads?

Post author:Kristen Lord
Post published:June 24, 2016
Post category:Pompe Disease Rare Disease

My grandpa—who is one of the most steadfast, honest, and true people I’ve ever met in my life—told me this: “The world isn’t made for ordinary people anymore.” Being a…

Laughter, the Best Medicine?

Post author:Rebekah
Post published:June 24, 2016
Post category:Rare Disease

Humor helps a lot of people deal with rough situations, but even if that's the case, you may not your doctor to attempt to weave it into an office visit.…

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You Won’t Feel Sad With MDS When You Have These 3 Things

Post author:Kiki Jones
Post published:June 24, 2016
Post category:Myelodysplastic syndromes Rare Disease

While his peers were getting learners’ permits and homecoming tickets, 16-year-old Conner Vollmer was getting an unexpected diagnosis of myelodysplastic syndrome (MDS). The pre-cancerous condition is rare, and even more…

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Eisenmenger Syndrome is Like a Dart to the Heart

Post author:Erica Zahn
Post published:June 24, 2016
Post category:Eisenmenger syndrome Rare Disease

Eisenmenger syndrome is a ventricular septum defect, which is a complication of a congenital heart defect, including atrial septal defects, ventricular septal defects, patent ductus arteriosus, and more complex types of acyanotic heart disease.…

Viviendo con 2 Enfermedades Raras, este blogger es un campeón

Post author:Patient Worthy Contributor
Post published:June 24, 2016
Post category:CVID Rare Disease

Conozcamos a Yoni Maisel – un paciente con una enfermedad rara, un activista y blogger. Su meta: crear conciencia sobre las enfermedades raras y ayudar a los demás a través…

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The Worst Question You Can Ever Ask and Why

Post author:Winnie Nash
Post published:June 23, 2016
Post category:Mucopolysaccharidosis Rare Disease

For those unfamiliar with it, mucopolysaccharidoses (MPS) is a wicked, wicked disease. It comes in a couple of different forms, but the form one little boy lives with is MPS II,…

This Rare Dad Owns His Dystonia

Post author:Kristen Lord
Post published:June 23, 2016
Post category:Dystonia Rare Disease

Photo by Sandro Georgi Photography "Don’t let Dystonia define who you are. Don’t let it control every single aspect of your life. For myself, it is part of me. It is…

How to Tell If Your IPF is Getting Better

Post author:EmpatheticBadass
Post published:June 23, 2016
Post category:IPF Rare Disease Timely

A May 25, 2016 article from Pulmonary Fibrosis News reports that Italian researchers are making headway in determining if a person’s IPF is progressing or not (which is in the…

6 Annoying POTS Symptoms Explained in GIFs

Post author:Patient Worthy Contributor
Post published:June 23, 2016
Post category:Dysautonomia POTS Rare Disease

If you have Postural Orthostatic Tachycardia Syndrome (POTS) then you are familiar with its on-and-off symptoms and living with generally unreliable health. What's more, is you may try to explain it…

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Inspiring Swimmer Refuses to Be Carried Out on the Tides of MG

Post author:Ronald Ledsen
Post published:June 23, 2016
Post category:Myasthenia Gravis Rare Disease

As if you needed further proof that the human spirit can accomplish incredible things, here’s a great story from “across the pond.” In 2012, 15-year-old British student Jessica Gillatt was…

New Hope for People Who Have IPF

It’s not Cheap to be Chronically Ill

The Really Amazing World of Human Genomes Will Stop Misdiagnosis

Dysautonomia Really Puts a Drag on Your Day

This Amazing Little Boy Smiles in the Face of PH

There’s a Quiet Courage in Chronic Illness

Unfamilar Reflections: An Acromegaly Story

Here’s How You Can Celebrate MPS Awareness Day Every Day of the Year

June Is Really About The Snowflakes

6 Non-motor Symptoms of Parkinson’s Told Through GIFs

This Girl with POTS Needs A Dog, Can We Make it Happen for Her?

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas?

Editor’s Choice: Amazing Young Adults, A Documentary and MG Awareness Month

This MPS Teen Will Make You Want to Look In The Mirror

What Do You Think About Your Rare Dads?

Laughter, the Best Medicine?

You Won’t Feel Sad With MDS When You Have These 3 Things

Eisenmenger Syndrome is Like a Dart to the Heart

Viviendo con 2 Enfermedades Raras, este blogger es un campeón

The Worst Question You Can Ever Ask and Why

This Rare Dad Owns His Dystonia

How to Tell If Your IPF is Getting Better

6 Annoying POTS Symptoms Explained in GIFs

Inspiring Swimmer Refuses to Be Carried Out on the Tides of MG

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