2016 – Page 59 – Patient Worthy

Rocky road isn’t just an ice cream

Post author:Patient Worthy Contributor
Post published:April 6, 2016
Post category:Rare Disease

Manny and Race CF at Worcester 2014

Man with Cystic Fibrosis Races to Help Others – Part 1

Post author:Patient Worthy Contributor
Post published:April 6, 2016
Post category:Cystic Fibrosis Rare Disease

“My biggest passion in life right now is our team and just trying to help those with CF to be active.”- Manny Goguen Twenty-four-year-old Manny Goguen, a man living with…

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They Have the Best Chocolate-Lover Tricks on the Ketogenic Diet

Post author:Kiki Jones
Post published:April 6, 2016
Post category:GLUT1 DS Rare Disease

In theory, I know there are people who don’t like chocolate. I have been told they exist. And I respect that choice. But my chocolate-loving heart really aches for people…

Participate don’t Procrastinate

Post author:Patient Worthy Contributor
Post published:April 6, 2016
Post category:Rare Disease

Choose Silver Linings

Post author:Patient Worthy Contributor
Post published:April 6, 2016
Post category:Rare Disease

Si usted tiene fibrosis quística, ¿estás loco a no querer un trasplante?

Post author:Patient Worthy Contributor
Post published:April 6, 2016
Post category:Cystic Fibrosis Rare Disease

Leí un artículo recientemente por Andrew Smith que me ha desconcertado, no por él, sino más bien los hechos alarmantes que discutí acerca de las personas con fibrosis quística (FQ)…

Kristina’s Fight with Narcolepsy

Post author:Rebekah
Post published:April 5, 2016
Post category:Narcolepsy

After years of being undiagnosed and even called lazy, Kristina finally learned she had narcolepsy. She's still learning how to best manage her life, with a husband and two kids,…

Parkinson’s Hope… in Your iPhone?!

Post author:Kathy Devanny
Post published:April 5, 2016
Post category:Parkinson's Disease Rare Disease

As families and individuals dealing with rare disease, we all want research and answers sooner- but we soon learn how slow that process is. But check out the hope below: 9500…

Fighter > Victim – Always Fight

Post author:Patient Worthy Contributor
Post published:April 5, 2016
Post category:Rare Disease

Is SCID the Most Serious of the Primary Immunodeficiency Disorders?

Post author:Erica Zahn
Post published:April 5, 2016
Post category:Rare Disease SCID

One of the many problems with having a rare disease is that very few people know anything about what you, or your loved one, go through on a day-to-day basis.…

Motivate Don’t Stagnate

Post author:Patient Worthy Contributor
Post published:April 5, 2016
Post category:Rare Disease

How to Get the Most Out of a Phone Call With Your INSURANCE Co.

Post author:Patient Worthy Contributor
Post published:April 5, 2016
Post category:Rare Disease

Living with a rare disease? Struggle with insurance coverage? Phone calls with your medical insurance company are THE WORST! But, a necessary evil. After years of struggling with insurance coverage and payment, Patient…

Upcoming MF Clinical Trial!

Post author:Kathy Devanny
Post published:April 5, 2016
Post category:mycosis fungoides Rare Disease

Mycosis Fungoides (MF) is a rare form of lymphoma that affects usually affects the skin causing inflammation, tumors, plaques, and redness. It only affects 3 to 4 people in a…

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La increíble nueva tecnología que todos aquellos con fibrosis quística querrá

Post author:Patient Worthy Contributor
Post published:April 5, 2016
Post category:Cystic Fibrosis

Nosotros aqui en PatientWorthy siempre estamos en la busqueda de nuevas manera para hacer mas facil la vida con una enfermedad cronica. Nos dimos cuenta sobre esta nueva tecnologia que podria ser como…

King of Comedy Laughed in the Face of Sarcoidosis

Post author:Patient Worthy Contributor
Post published:April 4, 2016
Post category:Rare Disease Sarcoidosis

Bernie Mac was a King of Comedy, but he was also living with sarcoidosis. April is sarcoidosis awareness month. What better time to honor one of the kings of comedy with…

Meme Monday Infographic – Sjögren’s and Mastocytosis

Post author:Patient Worthy Contributor
Post published:April 4, 2016
Post category:Rare Disease

Sjögren's Disease and Mastocytosis are two very different illnesses, but have one thing in common: they are VERY rare. The infographic below provides information about what the disease is, prevalence…

How HAE Changed This Woman’s Perspective of the World

Post author:Erica Zahn
Post published:April 4, 2016
Post category:HAE Rare Disease

As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…

Myelodysplastic Syndrome Takes Moses

Post author:Patient Worthy Contributor
Post published:April 4, 2016
Post category:Myelodysplastic syndromes Rare Disease

He was suffering from the rare myelodysplastic syndrome (MDS) and fell victim to acute leukumia. The former executive director of Uganda Wildlife Authority (UWA), Moses Mapesa passed away on the morning of March…

So I Don’t Have To Pee in a Cup?!

Post author:Patient Worthy Contributor
Post published:April 4, 2016
Post category:Addison's Disease Cushing Disease Rare Disease

Measuring Late-night Salivary Cortisol (LNSC) is an alternative to blood and urine for both research and diagnostic use. No wonder patients are opting for salivary cortisol testing over blood and…

The Not-So-Spine-Tingling Condition of AS

Post author:Erica Zahn
Post published:April 4, 2016
Post category:Ankylosing Spondylitis Rare Disease

Ankylosing Spondylitis (AS) is a form of inflammatory arthritis that most commonly affects the spine and is thought to have its roots in genetics. As symptoms worsen, the inflammation can travel…

7 maneras extrañas que sabes que tienes el síndrome de taquicardia postural ortostática (POTS)

Post author:Patient Worthy Contributor
Post published:April 4, 2016
Post category:Dysautonomia Lyme Disease POTS

Antes de que me diagnosticaran oficialmente con el síndrome de taquicardia postural ortostática (POTS, por sus siglas en ingles), pensaba que los síntomas extraños eran una parte de mí ser.…