Rare Disease – Page 244 – Patient Worthy

Breathe. #IPF

Post author:Kristen Lord
Post published:July 25, 2016
Post category:IPF Rare Disease

That should be easy right? Unfortunately for some, like those with IPF, it is not that simple. Their lungs produce scar tissue that prevents the body from getting the oxygen…

Acromegaly Clinical Trial: MPOWERED

Post author:Rebekah
Post published:July 25, 2016
Post category:Acromegaly Rare Disease

Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…

Meme- Persevere No Matter What

Post author:Rebekah
Post published:July 25, 2016
Post category:Rare Disease

Take things one day at a time. Know that the going isn't always easy and the path isn't always smooth. Your journey with your health is exactly that, a journey,…

NIH Finally Funding Lyme Research the Way it Should Be

Post author:Patient Worthy Contributor
Post published:July 25, 2016
Post category:Lyme Disease Rare Disease

I love my mom. She's on Facebook, obviously. Since I got sick, she's always sharing the latest Lyme news (obviously). She's the best and incredibly supportive of a disease that some…

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How to Find a Support Community When You Have IPF

Post author:EmpatheticBadass
Post published:July 25, 2016
Post category:IPF Rare Disease

Whether you’ve just been diagnosed with IPF, or you’ve been living with the diagnosis for a while now, there’s one website location that you should get to know: The Pulmonary…

5 cómics relacionables para el paciente con una enfermedad rara

Post author:Patient Worthy Contributor
Post published:July 25, 2016
Post category:Rare Disease

1. Las enfermedades raras tienden a venir con nombres largos y difíciles. Para las muchas personas que no están familiarizados con ellos, pueden ser un bocado y puede que tenga…

Editor’s Choice: What Does Salt Have to Do with Rare Disease?

Post author:Patient Worthy Contributor
Post published:July 22, 2016
Post category:Cystic Fibrosis Dysautonomia Myasthenia Gravis POTS Rare Disease

Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…

Acquired Hypopro… What?

Post author:Kristen Lord
Post published:July 22, 2016
Post category:Acquired hypoprothrombinemia Rare Disease

Just bringing some awareness to a disease you may not have heard of, especially since it only effects 1 in 2 million people. It's called Acquired Hypoprothrombinemia. This happens when the…

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Start Your IPF Research the Right Way

Post author:Ronald Ledsen
Post published:July 22, 2016
Post category:IPF Rare Disease

Pop quiz! What’s the difference between PF and IPF? (Other than an ‘I’?) Answer: Basically, nothing. PF, or pulmonary fibrosis, is a condition that causes scarring of the lungs and…

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…

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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…

Breathe. #IPF

Acromegaly Clinical Trial: MPOWERED

Meme- Persevere No Matter What

NIH Finally Funding Lyme Research the Way it Should Be

How to Find a Support Community When You Have IPF

Editor’s Choice: What Does Salt Have to Do with Rare Disease?

Acquired Hypopro… What?

Start Your IPF Research the Right Way

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

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