chronic illness Archives - Page 4 of 5

Meme: You’ve Got This

Post author:Rebekah
Post published:August 24, 2016
Post category:Rare Disease

Everyone has bad days, but don't think for a second that you can't handle this. The chronic life is rough but you're stronger than you know!

Meme: Patients are Experts

Post author:Rebekah
Post published:August 18, 2016
Post category:Rare Disease

This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in. Patients do so much…

Meme: Beautiful Crayons

Post author:Rebekah
Post published:August 10, 2016
Post category:Rare Disease

Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…

Pixabay

Sorry Not Sorry

Post author:Patient Worthy Contributor
Post published:August 8, 2016
Post category:Rare Disease

Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…

Pixabay.com

Don’t Ask: Does it Work?

Post author:Tom Seaman
Post published:August 4, 2016
Post category:Dystonia

There is currently no cure for most chronic health conditions so treatments are focused on reducing symptoms. I live with a condition called dystonia, a painful neurological movement disorder. Like…

Meme: Healthcare Road Map

Post author:Rebekah
Post published:August 4, 2016
Post category:Rare Disease

Surprises often aren't welcome when it comes to your health. Working with your healthcare team to develop reasonable expectations and general timeline can be comforting to many. Do you create…

La columna vertebral está conectada al… hueso del ojo?

Post author:Patient Worthy Contributor
Post published:August 2, 2016
Post category:Ankylosing Spondylitis Rare Disease

¿Crees que sabes todo lo que hay que saber sobre la espondilitis anquilosante (EA)? Piensa otra vez. Una nueva investigación ha revelado que las personas con AS tienen un mayor…

DarkoStojanovic / Pixabay

Cómo ayudar a su hijo navegar ICV

Post author:Patient Worthy Contributor
Post published:July 28, 2016
Post category:CVID Rare Disease

La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas?

Post author:Patient Worthy Contributor
Post published:June 27, 2016
Post category:HAE Rare Disease

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas? Congreso. La FDA. Defensores de los pacientes. Y Venture Philanthropy. Cuando se trata de enfermedades raras, los medicamentos…

Viviendo con 2 Enfermedades Raras, este blogger es un campeón

Post author:Patient Worthy Contributor
Post published:June 24, 2016
Post category:CVID Rare Disease

Conozcamos a Yoni Maisel – un paciente con una enfermedad rara, un activista y blogger. Su meta: crear conciencia sobre las enfermedades raras y ayudar a los demás a través…

7 maneras de manejar tu vida con ICV

Post author:Patient Worthy Contributor
Post published:June 21, 2016
Post category:CVID Rare Disease

Tras la obtención de un diagnóstico de una enfermedad crónica, como ICV o inmunodeficiencia variable común, es fácil sentirse abrumado. Abrumado por preguntas en su cabeza - ¿Qué hago ahora?…

Escuela de posgrado, trabajo, servicio, y enfermedades crónicas? Absolutamente

Post author:Patient Worthy Contributor
Post published:June 1, 2016
Post category:CVID Rare Disease

Conoce a Amanda! vlog de Amanda (video blog), ShAMANDAgans, le ayuda a mantenerse en contacto con amigos y familiares y compartir su historia. Ella es un ambicioso y alegre estudiante…

Free-Photos / Pixabay

¿Vas a correr, Eh? Canadienses corren por una buena causa

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Ankylosing Spondylitis Rare Disease

El 7 de junio de 2015, miles de personas salieron a las calles a través de Canadá en el Paseo anual para poner fin a la artritis. Una causa principal…

10 Consejos que salvaran tu cordura después de un diagnóstico

Post author:Patient Worthy Contributor
Post published:January 21, 2016
Post category:Myasthenia Gravis Rare Disease

Obtener un diagnóstico de cualquier tipo es aterrador. Conseguir un diagnóstico de una rara enfermedad autoinmune, que amenaza la vida que usted nunca ha oído hablar de es aterrador. Pero…

Doctor, Doctor, Give Me the Herb

Post author:James Ernest Cassady
Post published:January 19, 2016
Post category:Rare Disease

Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…

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…

Meme: You’ve Got This

Meme: Patients are Experts

Meme: Beautiful Crayons

Sorry Not Sorry

Don’t Ask: Does it Work?

Meme: Healthcare Road Map

La columna vertebral está conectada al… hueso del ojo?

Cómo ayudar a su hijo navegar ICV

¿Por qué les importa tanto las enfermedades raras a las compañías farmacéuticas?

Viviendo con 2 Enfermedades Raras, este blogger es un campeón

7 maneras de manejar tu vida con ICV

Escuela de posgrado, trabajo, servicio, y enfermedades crónicas? Absolutamente

¿Vas a correr, Eh? Canadienses corren por una buena causa

Doctor, Doctor, Give Me the Herb

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

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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