2016 – Page 70 – Patient Worthy

Hello Tremors, My Old Friend

Post author:Patient Worthy Contributor
Post published:February 16, 2016
Post category:Rare Disease

I realize that as a woman who has been unmarried and dating for her entire adult life, my vocabulary is vastly different from that of someone who has been married…

How To Be A Princess And Inform Your Subjects About PH

Post author:Farrah Fontaine
Post published:February 16, 2016
Post category:Primary Pulmonary Hypertension

When you have pulmonary hypertension (PH), sometimes the idea of just walking up stairs can be daunting. Kayleigh Johnson, who has been living with pulmonary arterial hypertension (PAH) for years, is going…

How to Not Die from Cystinosis: New Research on Treatments Offer Hope

Post author:Alisha Stone
Post published:February 15, 2016
Post category:Cystinosis

The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…

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POTS: People Oppressed by Treatment Shortages

Post author:James Ernest Cassady
Post published:February 15, 2016
Post category:POTS Rare Disease

Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands. Here's what you need…

How Do You Make Dystonia Disappear? Madonna!

Post author:James Ernest Cassady
Post published:February 15, 2016
Post category:Dystonia Rare Disease

When all else fails and you long to be Something better than you are today I know a place where you can get away It's called a dance floor, and…

How To Save Your Life When Caring For Muscular Dystrophy

Post author:Alisha Stone
Post published:February 15, 2016
Post category:Duchenne Muscular Dystrophy

It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to…

Conozcamos a Oakley: Un niño pequeño con enorme valentia

Post author:Patient Worthy Contributor
Post published:February 15, 2016
Post category:Rare Disease

Este es mi hijo Oakley, un niño de cinco años de edad con una sonrisa adorable, que ama a las Tortugas Ninja, y usted nunca adivinar lo que hemos pasado.…

Editor’s Choice: Valentine’s Weekend is Filled with Bad Patients, Big Butts and Crazy Pregnant Ladies

Post author:Patient Worthy Contributor
Post published:February 12, 2016
Post category:Ehlers-Danlos Syndrome Myasthenia Gravis Rare Disease

Happy almost-Valentine's Day Patient Worthians! What are your plans for this weekend? It's a special holiday-- Valentine's Day, designed for romance! But let's face it, chronic disease isn't always sexy, so maybe…

IDF Takes on the “Suits” of the Insurance Industry

Post author:Erica Zahn
Post published:February 12, 2016
Post category:Primary Immunodeficiencies

Every so often, actually more often then we'd like to think, the "suits" at health insurance companies sit down in their oak-lined board rooms and start flipping coins to see…

Deadlines Approaching for Rare Disease Week on Capitol Hill: Register NOW

Post author:Patient Worthy Contributor
Post published:February 12, 2016
Post category:Rare Disease

Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill. We are thrilled…

Getting a PFS Diagnosis (Video Series)

Post author:Patient Worthy Contributor
Post published:February 12, 2016
Post category:Rare Disease

Welcome to the second of many posts related to Patient Worthy’s Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has been diagnosed with…

Conozcamos a Melissa: La Panadera Altruista con Gastroparesia

Post author:Patient Worthy Contributor
Post published:February 12, 2016
Post category:Rare Disease

Conoce a Melissa, una esposa, madre y abogada. Patient Worthy entrevistó a Melissa sobre su #InvisibleIllness - gastroparesia. Hace casi dos años, no-bienvenida y sin previo aviso, la gastroparesia entró…

Not A Cure For POTS, But At Least There’s Hope

Post author:Patient Worthy Contributor
Post published:February 11, 2016
Post category:Dysautonomia POTS Rare Disease

It's the 'Lil Things.. So we're entering February. I had vowed to a "New Year...New Me." I wanted to find a sense of self worth, find my happiness, and seek…

Do You Have What It Takes To Complete Your Dystonia Destiny?

Post author:Farrah Fontaine
Post published:February 11, 2016
Post category:Dystonia

Do you want to be part of cervical dystonia history? Do you want to actually get paid to take an injection to treat your symptoms? C'mon, you know the answer…

How Is Acromegaly Not an Equal Opportunity Experience?

Post author:Erica Zahn
Post published:February 11, 2016
Post category:Acromegaly

Acromegaly, also called gigantism, is diagnosed in only 1 in 20,000 people in the United States. In 95% of cases, it's caused by a benign tumor on the pituitary gland called an adenoma. Acromegaly causes…

Cervical Dystonia Wasn’t in the Plot, But It Sure Changed the Story

Post author:Erica Zahn
Post published:February 11, 2016
Post category:Dystonia

Michael White, a 45-year-old writer from Vancouver, British Colombia, put everything he had on the line to take a leap of faith and write a book about his passion: music.…

LSD – It’s Not What You Think, Baby Boomer

Post author:Erica Zahn
Post published:February 11, 2016
Post category:Fabry Disease Gaucher Disease Pompe Disease

Lysosomal Storage Disorder, or LSD, is a catch-all term for more than 45 inherited metabolic disorders that result in the build-up of various toxins in the patient's cells. Currently, there is treatment…

Conozcamos a María: Detrás de Puertas Cerradas con SDRC

Post author:Patient Worthy Contributor
Post published:February 11, 2016
Post category:Complex Regional Pain Syndrome Rare Disease

Soy María; Soy una esposa y madre, fashionista y un entusiasta de zapato. No todos mis días son malos, pero nadie sabe acerca de los días realmente malos porque me…

Conozcan a Virginia: La Jovencita Invisible que Ahora se Está Haciendo Conocida

Post author:Patient Worthy Contributor
Post published:February 10, 2016
Post category:Rare Disease

"Es chistoso. El día que más temía, el día en que te diste cuenta que no ibas a subir el Monte Everest ha ido y venido, y que no se…

How To Survive A Diagnosis Of Addison’s Disease

Post author:Farrah Fontaine
Post published:February 10, 2016
Post category:Addison's Disease

"Doctors didn't know what was wrong with me." "The frustration of not knowing what was wrong with me was overwhelming." "It made me wonder if I had gone crazy." Sound…

Why You Should Seek a Second Opinion

Post author:Patient Worthy Contributor
Post published:February 10, 2016
Post category:Lyme Disease

Here at Patient Worthy, we can't stress enough how important it is for patients to advocate for themselves. With rare disease, you often have to fight for a diagnosis. But…

Being a Bad Patient Saved My Life, Part 3

Post author:Patient Worthy Contributor
Post published:February 10, 2016
Post category:Rare Disease

Part 3: The Christmas Baby Click here if you missed Part 2 The attention and help that I received from my team of doctors after this moment became applaudable. They…

Conozcamos a Shelly: Ella tiene más fuerza de lo requerido por muchos

Post author:Patient Worthy Contributor
Post published:February 9, 2016
Post category:Rare Disease

Mi nombre es Shelly. Soy cristiano, una esposa, una madre y un escritor-autor publicado de hecho, y así es como el mundo me conoce. Pero el resto del mundo, las…

Sjögren’s Foundation is Sick of Complaints and has the Guidelines to Prove it!

Post author:Erica Zahn
Post published:February 9, 2016
Post category:Sjogren's Syndrome

Sjögren’s syndrome is a chronic autoimmune disease that causes the body's white blood cells (the cells that ordinarily fight infection) to attack the moisture producing glands. Patients may have symptoms that include…

BREAKING (Mexico): Medical Marijuana First-Ever Federally Approved Cannabidiol (CBD) Product Shipped

Post author:Patient Worthy Contributor
Post published:February 9, 2016
Post category:Rare Disease

For those of us with rare diseases, the subject of Marinol and other marijuana-derived substances has certainly come up in conversations with doctors, at least in terms of it's pain…

Hello Tremors, My Old Friend

How To Be A Princess And Inform Your Subjects About PH

How to Not Die from Cystinosis: New Research on Treatments Offer Hope

POTS: People Oppressed by Treatment Shortages

How Do You Make Dystonia Disappear? Madonna!

How To Save Your Life When Caring For Muscular Dystrophy

Conozcamos a Oakley: Un niño pequeño con enorme valentia

Editor’s Choice: Valentine’s Weekend is Filled with Bad Patients, Big Butts and Crazy Pregnant Ladies

IDF Takes on the “Suits” of the Insurance Industry

Deadlines Approaching for Rare Disease Week on Capitol Hill: Register NOW

Getting a PFS Diagnosis (Video Series)

Conozcamos a Melissa: La Panadera Altruista con Gastroparesia

Not A Cure For POTS, But At Least There’s Hope

Do You Have What It Takes To Complete Your Dystonia Destiny?

How Is Acromegaly Not an Equal Opportunity Experience?

Cervical Dystonia Wasn’t in the Plot, But It Sure Changed the Story

LSD – It’s Not What You Think, Baby Boomer

Conozcamos a María: Detrás de Puertas Cerradas con SDRC

Conozcan a Virginia: La Jovencita Invisible que Ahora se Está Haciendo Conocida

How To Survive A Diagnosis Of Addison’s Disease

Why You Should Seek a Second Opinion

Being a Bad Patient Saved My Life, Part 3

Conozcamos a Shelly: Ella tiene más fuerza de lo requerido por muchos

Sjögren’s Foundation is Sick of Complaints and has the Guidelines to Prove it!

BREAKING (Mexico): Medical Marijuana First-Ever Federally Approved Cannabidiol (CBD) Product Shipped

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