chronic illness – Page 5

No-Way-Cupid

Post author:Rebekah
Post published:December 10, 2015
Post category:Rare Disease

I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…

Yolanda Foster: A Welcomed Lyme Disease Advocate

Post author:Patient Worthy Contributor
Post published:December 9, 2015
Post category:Lyme Disease

I am not a fan of reality television. But I am a helluva fan of Yolanda Foster, a Real Housewife of Beverly Hills. Though her and I probably don't have…

What Do Spoons Have To Do With Chronic Illness?

Post author:Rebekah
Post published:December 4, 2015
Post category:Ankylosing Spondylitis CAPS CVID HAE Rare Disease

When browsing through Tumblr or scrolling past tweets have you ever found yourself asking, "What is a spoonie?" It's time to find out. First of all, a spoonie is a…

Why me? Why Mine? The Unanswerable Questions of Illness

Post author:Patient Worthy Contributor
Post published:December 3, 2015
Post category:Ankylosing Spondylitis CAPS CVID HAE Rare Disease

Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…

Finally! Healthy and easy dessert you can eat with chronic illness.

A Healthy, Easy Dessert You CAN Eat With Chronic Illness

Post author:Patient Worthy Contributor
Post published:November 23, 2015
Post category:Dysautonomia POTS Rare Disease

I love desserts. Its “stressed” spelled backwards. There is just something relieving about being able to sink your teeth into something sweet. But when diagnosed with a chronic illness, often…

What are you thankful for this Thanksgiving?

What Are You Thankful For?

Post author:Patient Worthy Contributor
Post published:November 23, 2015
Post category:Myasthenia Gravis Rare Disease

Tis the season when gratitude is in the air (can you smell it?). Wait, that may be the pumpkin pie. Anyway, Thanksgiving is a time of reflection. A time where…

10 Tips That Will Save Your Sanity after a Diagnosis

Post author:Patient Worthy Contributor
Post published:November 11, 2015
Post category:Myasthenia Gravis Rare Disease

Getting a diagnosis of any kind is scary. Getting a diagnosis of a rare, life-threatening autoimmune disease that you have never heard of is terrifying. But if you’re reading this,…

This Paint Is Deadly. What You Need to Know.

Post author:EmpatheticBadass
Post published:November 11, 2015
Post category:CVID Primary Immunodeficiencies Rare Disease

Hospitals are germ-ridden, bacteria-infested places. Hospital-acquired infections—especially staph infections—are known to be a leading cause of death among hospitalized patients. For those of us with immune systems compromised by chronic illnesses…

Is Obamacare on the Good Side or Bad Side of Chronic Drug Costs

Post author:Patient Worthy Contributor
Post published:October 16, 2015
Post category:Rare Disease

Basically everybody has been affected by the high costs of healthcare at some point in their lifetime, and for many, not much changed when Obamacare (Affordable Care Act) came to…

How To Absolutely Crush Your Next Fundraiser

Post author:Patient Worthy Contributor
Post published:August 28, 2015
Post category:Cystinosis Rare Disease

What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…

New Chronic Mascot? Meet #SpoonieShark!

Post author:Rebekah
Post published:August 18, 2015
Post category:Rare Disease

Recent twitter developments in the Chronic community have involved the possible discovery of a new mascot. Karl Austin (@Porkchop275) came across a picture of a shark, and after determining that…

Are You a Full-Time Patient? You Deserve a Break!

Post author:Patient Worthy Contributor
Post published:August 13, 2015
Post category:Rare Disease

As summer winds down, many of us are scrambling to get onnnnnnne more vacation in. Whether it’s a day on the beach, a picnic in the park, or a road…

The Back Bone is Connected to the… Eye Bone?

Post author:Patient Worthy Contributor
Post published:July 15, 2015
Post category:Ankylosing Spondylitis Rare Disease

Think you know all there is to know about ankylosing spondylitis (AS)? Think again. New research has revealed that people with AS are at a greater risk for having acute anterior…

Why do Pharma Companies Care About Rare Diseases?

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:HAE Rare Disease

Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…

Living with 2 Rare Diseases, this Blogger is a Champion

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:CVID Rare Disease

Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information. Yoni Maisel (Yonatan Maisel)…

A 7-Layered “How To” on Managing Your Life with CVID

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:CVID Rare Disease

Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it's easy to get overwhelmed. Bogged down by questions in your head--What do I do…

Grad School, Work, Service, AND Chronic Illnesses? You Bet

Post author:Rebekah
Post published:June 15, 2015
Post category:CVID Rare Disease

Meet Amanda! Amanda’s vlog (video blog), ShAMANDAgans, helps her keep in touch with friends and family and share her story. She’s an ambitious and cheerful graduate student; going to…

Are you Walking, Eh? Canadians Lace Up for a Good Cause

Post author:Patient Worthy Contributor
Post published:June 12, 2015
Post category:Ankylosing Spondylitis Rare Disease

On June 7, 2015, thousands of people took to the streets across Canada in the annual Walk to End Arthritis. A leading cause of disability, arthritis costs the Canadian economy $33 billion…

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No-Way-Cupid

Yolanda Foster: A Welcomed Lyme Disease Advocate

What Do Spoons Have To Do With Chronic Illness?

Why me? Why Mine? The Unanswerable Questions of Illness

A Healthy, Easy Dessert You CAN Eat With Chronic Illness

This Paint Is Deadly. What You Need to Know.

Is Obamacare on the Good Side or Bad Side of Chronic Drug Costs

How To Absolutely Crush Your Next Fundraiser

New Chronic Mascot? Meet #SpoonieShark!

Are You a Full-Time Patient? You Deserve a Break!

The Back Bone is Connected to the… Eye Bone?

Why do Pharma Companies Care About Rare Diseases?

Living with 2 Rare Diseases, this Blogger is a Champion

A 7-Layered “How To” on Managing Your Life with CVID

Grad School, Work, Service, AND Chronic Illnesses? You Bet

Are you Walking, Eh? Canadians Lace Up for a Good Cause

Metastatic Breast Cancer: Navigating Grief

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

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