Rare Disease – Page 249 – Patient Worthy

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…

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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…

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This Big Deal Could Lead to an IPF Breakthrough in the EU

Post author:Ronald Ledsen
Post published:July 18, 2016
Post category:IPF Rare Disease

Have you been following the news out of Europe recently? Between “Brexit” and the ongoing clashes over immigration, it would appear the continent’s fragile unity is coming apart before our…

Breath of Hope for IPF

Post author:Kristen Lord
Post published:July 18, 2016
Post category:IPF Rare Disease

This September is IPF Awareness Month. The slogan this year for IPFWorld.com is Breath of Hope! Help raise awareness by Blowing Soap Bubbles, or dress up in blue and post…

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Misogyny Meant Years of Misdiagnosis for This Poor Girl

Post author:Kiki Jones
Post published:July 18, 2016
Post category:Dysautonomia POTS Rare Disease

I love the Golden Girls, and oddly enough, I was watching one of my favorite episodes the day before I started writing this post. The episode is the second of…

This September Blow Bubbles For IPF

Post author:Kristen Lord
Post published:July 18, 2016
Post category:IPF Rare Disease

September is IPF Awareness Month. Take a picture of yourself blowing bubbles and share them to help the cause! Use #IPF and #IPFWorld and challenge the world to join in!…

Don’t Let Bell’s Palsy Steal Your Smile

Post author:PW Blogger
Post published:July 18, 2016
Post category:Lyme Disease Rare Disease Sarcoidosis

You're sitting across the table with a friend having a nice conversation over dinner, when you notice something's wrong: half of your friend's face is drooping. Because you're not a…

Do Your Doctors Listen Actively?

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

Active listening is important. Your health care provider needs to know not only your symptoms but also your concerns so that they can adequately address them. Arguably this is even…

Two MG Triggers That This Blogger Thinks You Need to Know

Post author:Kiki Jones
Post published:July 18, 2016
Post category:Myasthenia Gravis Rare Disease

I think most of us have realized by now that being a special snowflake doesn’t always feel that special. As much as I’m a proponent of celebrating our differences, when it…

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Conozca a TZ la cebra del FDI! #namethezebra

Post author:Patient Worthy Contributor
Post published:July 18, 2016
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

Conozca a TZ la cebra del FDI! #namethezebra Os contamos la conferencia de este año iba a ser muy emocionante en nuestro anterior post, 2 razones por las que la…

Editor’s Choice: Dogs, Data and Disorders

Post author:Patient Worthy Contributor
Post published:July 15, 2016
Post category:Ankylosing Spondylitis Dysautonomia Narcolepsy POTS Rare Disease

Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…

Only Moments Should Take Your Breath Away – IPF

Post author:Kristen Lord
Post published:July 15, 2016
Post category:IPF Rare Disease

It is my sincere hope that everyone has a life full of moments that are so great they take your breath away and remain in your memory forever. Unfortunately there are…

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This is the Hyperparathyroidism Finding that Shocked Researchers

Post author:Ronald Ledsen
Post published:July 15, 2016
Post category:Familial isolated hyperparathyroidism Rare Disease

Ok, this is different. Usually when we’re reporting on a new drug study or talking about medication, we’re all about better living through chemicals. So, it’s a little weird to…

Blooming Despite the Adversity of Illness

Post author:Rebekah
Post published:July 15, 2016
Post category:Rare Disease

Everything that you do is more impressive than if the average person did it, because you're not average. Everyday you're combating a rare disease on top everything else. Everything you…

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!

This Big Deal Could Lead to an IPF Breakthrough in the EU

Breath of Hope for IPF

Misogyny Meant Years of Misdiagnosis for This Poor Girl

This September Blow Bubbles For IPF

Don’t Let Bell’s Palsy Steal Your Smile

Do Your Doctors Listen Actively?

Two MG Triggers That This Blogger Thinks You Need to Know

Conozca a TZ la cebra del FDI! #namethezebra

Editor’s Choice: Dogs, Data and Disorders

Only Moments Should Take Your Breath Away – IPF

This is the Hyperparathyroidism Finding that Shocked Researchers

Blooming Despite the Adversity of Illness

Let’s Work Together!

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