2017 – Page 57 – Patient Worthy

My Life with Lyme

Post author:Patient Worthy Contributor
Post published:May 8, 2017
Post category:Lyme Disease Rare Disease

"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…

https://pixabay.com/en/summerfield-woman-girl-sunset-336672/

Adolescent’s Mysterious Symptoms Yield Startling Diagnosis

Post author:Al Pendleton
Post published:May 8, 2017
Post category:Dysautonomia Rare Disease

A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…

https://pixabay.com/en/star-clusters-rosette-nebula-star-67616/

It’s a Bloody Mess to be One in a Million

Post author:Al Pendleton
Post published:May 8, 2017
Post category:Glanzmann thrombasthenia Rare Disease

Has anyone ever called you one in a million? You took it as a compliment, no doubt. Maybe you saw this as someone saying that you’re special, you’re unique, you’re…

Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Post author:Patient Worthy Contributor
Post published:May 5, 2017
Post category:Batten Disease CGD Cystinosis Idiopathic Pulmonary Fibrosis IPF Primary Immunodeficiencies Rare Disease

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

https://pixabay.com/en/magic-cube-patience-tricky-hobby-1976725/

Cushing’s Disease is Tough to Diagnose, but Help is Available

Post author:Erica Zahn
Post published:May 5, 2017
Post category:Cushing Disease Rare Disease

The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…

https://pixabay.com/en/violinist-tightrope-walker-clown-735413/

When Balancing Treatment and Side Effects Feels Like Walking a Tightrope

Post author:Al Pendleton
Post published:May 5, 2017
Post category:Churg-Strauss Syndrome Rare Disease

Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…

https://pixabay.com/en/mom-daughter-son-relationship-2208928/

Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You

Post author:Sabina Kennedy
Post published:May 5, 2017
Post category:Friedreich ataxia Rare Disease

Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…

https://pixabay.com/en/refrigerator-box-cookie-jar-blue-1728501/

CRISPR: Sickle Cell Anemia Treatment’s Latest Breakthrough

Post author:Al Pendleton
Post published:May 5, 2017
Post category:Sickle cell anemia

When people think of the monumental achievements of science, most think of landing a man on the moon and bringing him home again. That is an impressive feat. However, science…

https://pixabay.com/en/virus-bacteria-epidemic-health-1675421/

Why the FDA Approved Using Viruses to Fix Hemophilia

Post author:Al Pendleton
Post published:May 5, 2017
Post category:Hemophilia B Rare Disease Timely

There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…

Arthritis Foundation Saves the Day for One Young Man with JIA

Post author:Erica Zahn
Post published:May 4, 2017
Post category:Juvenile idiopathic arthritis Rare Disease Systemic Scleroderma

Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…

https://pixabay.com/en/alcohol-gel-hygiene-disinfect-clean-818254/

Short Bowel Syndrome is on the Rise… Here’s Why

Post author:Danielle Giudicianni
Post published:May 4, 2017
Post category:Rare Disease Short bowel syndrome

With the rise of medical advancements, you would think that fewer people would end up with short bowel syndrome (SBS). Yet, that is not the case. The reason for developing SBS…

https://pixabay.com/en/audience-speech-speaker-1677028/

Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

Post author:Patient Worthy Contributor
Post published:May 4, 2017
Post category:Rare Disease

National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have an all day program to discuss…

Love in the Time of Cystinosis: How Battling a Rare Condition Lead to a Lasting Romance

Post author:Jean Martell
Post published:May 4, 2017
Post category:Cystinosis Rare Disease

It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but at the end of the…

Need a Dose of Inspiration? Read This Heartwarming Hunter Syndrome Story

Post author:Nia
Post published:May 4, 2017
Post category:MPS II (Hunter Syndrome)Rare Disease

One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…

https://pixabay.com/en/christmas-decoration-street-night-1907822/

Missouri Man Shines a Light on Raising Money for Cystic Fibrosis

Post author:Erica Zahn
Post published:May 4, 2017
Post category:Cystic Fibrosis Rare Disease

Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…

MGFA Conference Take-Aways: Preparing for Medical Emergencies

Post author:Rebekah
Post published:May 4, 2017
Post category:Myasthenia Gravis Rare Disease Timely

At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O'Meara (MG patient and registered nurse), and Shannon…

https://pixabay.com/en/pulse-ox-oximetry-oxygenation-1936588/

The BEST Method of Explaining IPF Oxygen Therapy to Patients is FREE

Post author:Alisha Stone
Post published:May 4, 2017
Post category:Idiopathic Pulmonary Fibrosis IPF Rare Disease

When your lungs aren’t getting enough oxygen, it’s a real problem. A big problem, especially, when a person is living with idiopathic pulmonary fibrosis (IPF). But that’s not the only…

https://pixabay.com/en/globe-australia-continent-geography-3111395/

A Drug Developed in Australia For Duchenne Muscular Dystrophy Hasn’t Been Approved There

Post author:Octavia Walker
Post published:May 3, 2017
Post category:Duchenne Muscular Dystrophy Rare Disease

Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…

https://pixabay.com/en/medical-appointment-doctor-563427/

Diagnosing Primary Biliary Cholangitis: What You Should Know

Post author:Nia
Post published:May 3, 2017
Post category:Primary Biliary Cholangitis Rare Disease

Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…

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Two Important Events if You or Someone You Love has Amyloidosis

Post author:Kathy Devanny
Post published:May 3, 2017
Post category:Amyloidosis Rare Disease Timely

1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from…

https://pixabay.com/en/smartphone-technology-mockup-apps-1283938/

This New Sarcoidosis App Could Expand Our Understanding of the Disease

Post author:Ellen Johnson
Post published:May 3, 2017
Post category:Rare Disease Sarcoidosis

According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients. Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research.…

https://pixabay.com/en/football-team-huddle-teamwork-1523041/

Boy with SMA is the True Inspiration for This Football Team

Post author:Nia
Post published:May 3, 2017
Post category:Rare Disease Spinal Muscular Atrophy

12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…

https://pixabay.com/en/book-page-paper-letters-lines-1623578/

Sharing Jonathan and Bryce’s Hunter Syndrome Stories Helps Us All

Post author:Nia
Post published:May 3, 2017
Post category:MPS II (Hunter Syndrome)Rare Disease

Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…

https://pixabay.com/en/concert-violin-violinist-music-1838412/

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

Post author:Erica Zahn
Post published:May 3, 2017
Post category:Dystonia Rare Disease Timely

A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…

https://pixabay.com/en/golf-cart-grass-outdoor-golf-756048/

A Man with AS is Fighting the Town to Use His Golf Cart

Post author:Nia
Post published:May 2, 2017
Post category:Ankylosing Spondylitis Rare Disease

Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…

My Life with Lyme

Adolescent’s Mysterious Symptoms Yield Startling Diagnosis

It’s a Bloody Mess to be One in a Million

Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Cushing’s Disease is Tough to Diagnose, but Help is Available

When Balancing Treatment and Side Effects Feels Like Walking a Tightrope

Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You

CRISPR: Sickle Cell Anemia Treatment’s Latest Breakthrough

Why the FDA Approved Using Viruses to Fix Hemophilia

Arthritis Foundation Saves the Day for One Young Man with JIA

Short Bowel Syndrome is on the Rise… Here’s Why

Are You Ready for NCATS Advocacy Day?: Partnering with Patients for Smarter Science

Love in the Time of Cystinosis: How Battling a Rare Condition Lead to a Lasting Romance

Need a Dose of Inspiration? Read This Heartwarming Hunter Syndrome Story

Missouri Man Shines a Light on Raising Money for Cystic Fibrosis

MGFA Conference Take-Aways: Preparing for Medical Emergencies

The BEST Method of Explaining IPF Oxygen Therapy to Patients is FREE

A Drug Developed in Australia For Duchenne Muscular Dystrophy Hasn’t Been Approved There

Diagnosing Primary Biliary Cholangitis: What You Should Know

Two Important Events if You or Someone You Love has Amyloidosis

This New Sarcoidosis App Could Expand Our Understanding of the Disease

Boy with SMA is the True Inspiration for This Football Team

Sharing Jonathan and Bryce’s Hunter Syndrome Stories Helps Us All

Get Ready… The NYC Dystonia Patient Symposium is Coming Up Next Week!

A Man with AS is Fighting the Town to Use His Golf Cart

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