April 2016 - Page 5 of 9 - Patient Worthy

366 talking tips – Importance of talking hobbies with your doctor

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Rare Disease

Rare Patient Voices Wanted: Speak Your Mind

Post author:James Stone
Post published:April 14, 2016
Post category:Rare Disease

Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this: The conversation…

Mastocytosis Awareness Meme

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Rare Disease

8 Signs of Love When Your Better Half Has POTS

Post author:James Stone
Post published:April 14, 2016
Post category:POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is definitely not an easy disease to live with. You know, the heart rate and all. Oh and those pointless discussions if it's a disease…

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5 lecciones que nos trae esta madre con fibrosis quística en el 2016

Post author:Patient Worthy Contributor
Post published:April 14, 2016
Post category:Cystic Fibrosis Rare Disease

La familia Corr ha tenido un año difícil. Resistente, seguro, pero igual de feliz. Ellos han estado adaptando a la vida con su hija mayor año Harriet. Poco después del…

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Expert Advice: How to Bring Happiness Into Your Life With CGD

Post author:Alisha Stone
Post published:April 13, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease

Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…

The ABCs Of Common Variable Immunodefiency

Post author:Lady Kehveen Abernathy
Post published:April 13, 2016
Post category:CVID

So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…

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Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?

Post author:Ronald Ledsen
Post published:April 13, 2016
Post category:Rare Disease Sjogren's Syndrome

When you’re living with a rare condition like Sjögren’s syndrome, sharing your diagnosis with a famous name can be both a blessing and a curse. Obviously, it’s helpful to be…

Meme Motivation – Believe in Yourself!

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Kristina’s Call to Others with Narcolepsy

Post author:Rebekah
Post published:April 13, 2016
Post category:Narcolepsy

When Patient Worthy met with Kristina to hear about her journey with narcolepsy she was happy to put her story out there for more reasons than one. She was hopeful…

Sjogren’s Awareness Meme

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Quick And Easy Facts About CGD To Get You Started

Post author:Erica Zahn
Post published:April 13, 2016
Post category:CGD Primary Immunodeficiencies Rare Disease

Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…

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Think You Know About Gaucher? Think Again

Post author:James Ernest Cassady
Post published:April 13, 2016
Post category:Gaucher Disease Rare Disease

How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…

Meme Motivation – Daily Battle for Consistency

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Rare Disease

Opening a can of biscuits can be a terrifying ordeal but feeling like one... ooofff. Just in case you didn't know what a busted can of biscuits feels or looks…

“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio

Post author:Patient Worthy Contributor
Post published:April 13, 2016
Post category:Cystic Fibrosis Rare Disease

Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…

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Is This Why Sjogren’s Is On The Rise?

Post author:Alisha Stone
Post published:April 12, 2016
Post category:Rare Disease Sjogren's Syndrome

When the legendary Venus Williams was diagnosed with Sjogren’s in 2011, it sent shock waves throughout the tennis industry and the world. Seems Venus is doing well these days, which…

New Show Brings Rare Patients Together

Post author:Rebekah
Post published:April 12, 2016
Post category:Rare Disease

TLC launched a new show less than a week ago that is of particular interest to the rare disease community. Their series “Two in a Million” builds off a concept…

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Are You A Teen With A Rare Disease? This Is For You

Post author:Lady Kehveen Abernathy
Post published:April 12, 2016
Post category:CVID Rare Disease

Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…

Is Personalized Treatment for CVID on the Horizon?

Post author:EmpatheticBadass
Post published:April 12, 2016
Post category:CVID Primary Immunodeficiencies

Sometimes when we’re feeling low over the fact that there’s no cure for what ails people with combined variable immune deficiency (CVID), it’s hard to remember that doctors and scientists…

366 talking tips – A Doctor’s Thoughtfulness

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

Why I Think The Name “Bubble Boy” Has Overstayed Its Welcome

Post author:Lady Kehveen Abernathy
Post published:April 12, 2016
Post category:Rare Disease SCID

Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…

366 talking tips – Doctor’s appointments are like plays

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

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Acromegaly: A Big Deal That’s Often Misdiagnosed

Post author:Erica Zahn
Post published:April 12, 2016
Post category:Acromegaly Rare Disease

When someone has too much human growth hormone, or GH, which is produced by the pituitary gland, the most frequent outcome is a disorder called acromegaly. It's debilitating, painful, and disfiguring--and…

366 Talking Tips – Kindness

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

Kristina’s Story: Narcolepsy and Stigma

Post author:Rebekah
Post published:April 12, 2016
Post category:Narcolepsy

Unfortunately, stigma is something many patients are all too familiar with. Patients with chronic pain may be labeled as drug seekers. Patients who occasionally need assistance walking and sometimes don't…

366 talking tips – Importance of talking hobbies with your doctor

Rare Patient Voices Wanted: Speak Your Mind

Mastocytosis Awareness Meme

8 Signs of Love When Your Better Half Has POTS

5 lecciones que nos trae esta madre con fibrosis quística en el 2016

Expert Advice: How to Bring Happiness Into Your Life With CGD

The ABCs Of Common Variable Immunodefiency

Is A Vegan Diet The Best Way To Fight Sjogren’s Syndrome?

Meme Motivation – Believe in Yourself!

Kristina’s Call to Others with Narcolepsy

Sjogren’s Awareness Meme

Quick And Easy Facts About CGD To Get You Started

Think You Know About Gaucher? Think Again

Meme Motivation – Daily Battle for Consistency

“La Vecina” tiene un destino inspirador con la fibrosis quística y el Ejercicio

Is This Why Sjogren’s Is On The Rise?

New Show Brings Rare Patients Together

Are You A Teen With A Rare Disease? This Is For You

Is Personalized Treatment for CVID on the Horizon?

366 talking tips – A Doctor’s Thoughtfulness

Why I Think The Name “Bubble Boy” Has Overstayed Its Welcome

366 talking tips – Doctor’s appointments are like plays

Acromegaly: A Big Deal That’s Often Misdiagnosed

366 Talking Tips – Kindness

Kristina’s Story: Narcolepsy and Stigma

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

“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story

Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes

We Need Equity and Diversity Within Rare Disease Research

DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1

Bridging the Diversity Gap in Healthcare

Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

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