Rare Disease – Page 248 – Patient Worthy

Meme: Sexy Illness

Post author:Rebekah
Post published:July 22, 2016
Post category:Rare Disease

Illness isn't always pretty even when it's "invisible". What your peers might not see, your family and significant other probably has a little more insight to. In sickness and in…

How to Live Better with Behcet’s

Post author:Farrah Fontaine
Post published:July 22, 2016
Post category:Behçet's Rare Disease

So, you got the big ol' BD diagnosis, huh? And now you're trying to figure out how to live with it, right? Same here. See, Behcet's disease (or Behcet's syndrome) is…

This Man Doesn’t Need a Sexy Headline to Inspire Hope

Post author:Lady Kehveen Abernathy
Post published:July 22, 2016
Post category:IPF Rare Disease

When diagnosed with idiopathic pulmonary fibrosis (IPF), physical activity is pretty much out of the cards. Or is it? With IPF, heavy scarring in the lungs hardens the tissue and makes…

2 razones por las que la Conferencia Nacional del FDI es aún más emocionante

Post author:Patient Worthy Contributor
Post published:July 22, 2016
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

2015 Conferencia Nacional de la FDI se acerca rápidamente! Durante 3 días, Louisiana dará la bienvenida a las FDI y todos sus componentes y colaboradores. A partir del jueves, de…

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5 Things You Need To Know About Living Happy With POTS

Post author:Kiki Jones
Post published:July 21, 2016
Post category:Dysautonomia POTS Rare Disease

Despite what strangers and acquaintances seem to think, I’m not a positive or even particularly friendly person. I rarely, if ever, look on the bright side—I don’t even consider literal…

#BlueUp4PF – IPF Awarenss

Post author:Kristen Lord
Post published:July 21, 2016
Post category:IPF Rare Disease

This September #BlueUp4PF! September is IPF Awareness Month. Show your support and help by taking a picture of yourself sporting as much blue as possible and sharing it with the…

Pixabay

Do Not Make the Same Deadly Mistake this Celebrity Did

Post author:Lady Kehveen Abernathy
Post published:July 21, 2016
Post category:Familial isolated hyperparathyroidism Rare Disease

The thing about celebrities is that, because we place them on huge pedestals of perfection and idolization, we can't imagine them living with any kind of "imperfection." We can't help…

Meme: Communication = Goals

Post author:Rebekah
Post published:July 21, 2016
Post category:Rare Disease

Communication is key, and it's extra-important for patients with rare diseases. Be sure to communicate with your doctors; how you're feeling and what you want to know. Communicate with your…

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Clones, Blobs, Organs: What You Need to Know About Shocking New Technology

Post author:Kiki Jones
Post published:July 21, 2016
Post category:Cystic Fibrosis Rare Disease Timely

Picture this: You walk into a lab and find these slimy-looking, colorful blobs sitting in petri dishes. You get closer. Closer. The blobs take shape; they are livers, kidneys, and…

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Here’s the Unexpected Home of the Best POTS Information

Post author:Kiki Jones
Post published:July 21, 2016
Post category:Dysautonomia POTS Rare Disease

Pinterest: Home of DIY decorations, hair tips, cake recipes, and POTS treatment suggestions... ...Weren’t expecting that last one, were you? In addition to memes and instructions for upcycling vintage suitcases,…

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7 jugadas increíbles para animar el retorno del jugador de la MLB con espondilitis anquilosante

Post author:Patient Worthy Contributor
Post published:July 21, 2016
Post category:Ankylosing Spondylitis Rare Disease

Franklin Gutiérrez está de vuelta! Después de tratar con el largo camino de la recuperación de su diagnóstico de la espondilitis anquilosante, que detallamos aquí, Gutiérrez hizo su primera MLB…

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Would You Believe Only 20 People In the World Have DBHD?

Post author:EmpatheticBadass
Post published:July 20, 2016
Post category:Dopamine beta hydroxylase deficiency Dysautonomia POTS Rare Disease

As much as we want the letters DBHD to stand for “Daily Better Health, Dearie,” those very rare people, whose genetic makeup includes a particular mutation, will translate the acronym more correctly…

Looking For Rainbows?

Post author:Kristen Lord
Post published:July 20, 2016
Post category:Rare Disease

When it Rains look for rainbows. When it's dark Look for stars. Just some positive words for those going through rough times. It may seem like everything is dark now,…

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How to Paint a Picture of Life with MG

Post author:Ronald Ledsen
Post published:July 20, 2016
Post category:Myasthenia Gravis Rare Disease

Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does…

Meet AH

Post author:Kristen Lord
Post published:July 20, 2016
Post category:Acquired hypoprothrombinemia Rare Disease

Acquired Hypoprothrombinemia is a disease that only effects about 1 in 2 million people. A.H. is when the body is lacking the protein Prothrombin that synthesizes Vitamin K and causes blood…

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If You’re Not Wearing a Medical ID Bracelet, You Need to Be

Post author:Winnie Nash
Post published:July 20, 2016
Post category:Hemophilia A Hemophilia B Rare Disease

We get it. There’s nothing cute about a medical ID bracelet. But if you’re someone living with a rare condition like hemophilia, it becomes less a fashion accessory, and more…

Source: www.pixabay.com

What You Need To Know About MG And Clean Eating

Post author:Farrah Fontaine
Post published:July 20, 2016
Post category:Myasthenia Gravis Rare Disease

Recently, I wrote a post about the use of complimentary therapies, which are non-medication therapies you can use to help support your body. While things like acupuncture and yoga are…

Cómo ser 100% devoto a través de la enfermedad y la salud

Post author:Patient Worthy Contributor
Post published:July 20, 2016
Post category:CVID Rare Disease

Julia Domenick ha pasado casi cinco años cuidando a su marido Andrew "dibujó" después de que de repente se enfermó. "Dibujó simplemente hubiera cumplido 50 años en rehabilitación! Nunca pensamos…

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Is This a Hemophilia B Breakthrough in the Making?

Post author:Ronald Ledsen
Post published:July 19, 2016
Post category:Hemophilia B Rare Disease

While it wouldn’t be fair to describe hemophilia B as the red-headed stepchild of the bleeding disorder community, it is far rarer than the more common hemophilia A, and bleeds…

Do You Know IPF?

Post author:Kristen Lord
Post published:July 19, 2016
Post category:IPF Rare Disease

IPF or Idiomatic Pulmonary Fibrosis is a disease that causes scarring and stiffness in the lungs making it hard for the lungs to move oxygen into the bloodstream, the brain…

Damn, This Kind Woman Makes Us All Look Bad

Post author:PW Blogger
Post published:July 19, 2016
Post category:Dystonia Rare Disease

Casey Noe is living with a rare disease that affects almost every aspect of her life, but she doesn't let it stop her from helping others who also suffer from…

Let Your Community Know You Care About IPF!

Post author:Kristen Lord
Post published:July 19, 2016
Post category:IPF Rare Disease

This September is IPF Awareness Month. Write to your governor, mayor or city council member and proclaim it for your city or state. Bring your community together and make a…

How to Keep Your Unborn Baby Safe From RDS

Post author:PW Blogger
Post published:July 19, 2016
Post category:neonatal respiratory distress syndrome Rare Disease

Do you know the most common reason people are hospitalized? No, it's not a heart attack. It's not pneumonia. It's childbirth! Every year in the United States, about 4 million…

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She Has IPAH, But That Will Not Stop This Determined Woman

Post author:Kiki Jones
Post published:July 19, 2016
Post category:pulmonary arterial hypertension Rare Disease

Claire Tarr is making a name for herself by moving forward. Diagnosed at 30 years old with idiopathic pulmonary arterial hypertension (IPAH), Tarr refuses to freeze in fear. “I try…

¿Te sientes solo viviendo con una inmunodeficiencia primaria? Hay 82 personas como tú!

Post author:Patient Worthy Contributor
Post published:July 19, 2016
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

Les dijimos por qué la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la Conferencia Nacional 2015 IDF es aún…

Meme: Sexy Illness

How to Live Better with Behcet’s

This Man Doesn’t Need a Sexy Headline to Inspire Hope

2 razones por las que la Conferencia Nacional del FDI es aún más emocionante

5 Things You Need To Know About Living Happy With POTS

#BlueUp4PF – IPF Awarenss

Do Not Make the Same Deadly Mistake this Celebrity Did

Meme: Communication = Goals

Clones, Blobs, Organs: What You Need to Know About Shocking New Technology

Here’s the Unexpected Home of the Best POTS Information

7 jugadas increíbles para animar el retorno del jugador de la MLB con espondilitis anquilosante

Would You Believe Only 20 People In the World Have DBHD?

Looking For Rainbows?

How to Paint a Picture of Life with MG

Meet AH

If You’re Not Wearing a Medical ID Bracelet, You Need to Be

What You Need To Know About MG And Clean Eating

Cómo ser 100% devoto a través de la enfermedad y la salud

Is This a Hemophilia B Breakthrough in the Making?

Do You Know IPF?

Damn, This Kind Woman Makes Us All Look Bad

Let Your Community Know You Care About IPF!

How to Keep Your Unborn Baby Safe From RDS

She Has IPAH, But That Will Not Stop This Determined Woman

¿Te sientes solo viviendo con una inmunodeficiencia primaria? Hay 82 personas como tú!

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