Rare Disease – Page 250 – Patient Worthy

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When Mom is Sick

Post author:Patient Worthy Contributor
Post published:May 31, 2016
Post category:Rare Disease Sjogren's Syndrome

The old saying goes "When momma ain't happy, ain't nobody happy." And we all laugh a bit because there is a trace of truth in it. But what about when momma…

Perdiendo el tren acerca del AEH

Post author:Patient Worthy Contributor
Post published:May 31, 2016
Post category:HAE Rare Disease

Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…

Every Kid With Cystinosis Needs a Cool Aunt Like This

Post author:Ronald Ledsen
Post published:May 30, 2016
Post category:Cystinosis Rare Disease

Here at Patient Worthy, we spill a lot of (virtual) ink talking about all aspects of living with a rare disease. Our goal is to be supportive and understanding, a…

How Aware Are You This Lyme Disease Awareness Month?

Post author:Kristen Lord
Post published:May 30, 2016
Post category:Lyme Disease Rare Disease

May is Lyme Disease Awareness Month. Read more here, be informed and learn how you can be a part of the solution.

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New Cystic Fibrosis Screening

Post author:Ronald Ledsen
Post published:May 30, 2016
Post category:Cystic Fibrosis Rare Disease

In the world of diagnostics and treatment, change is usually a slow, gradual process. But so far, this is turning out to be a damn good year for anyone interested…

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Las manos elocuentes dicen mas que las palabras en este video sobre las Enfermedades Raras

Post author:Patient Worthy Contributor
Post published:May 30, 2016
Post category:Rare Disease

Manos amigas pueden hacer cosas realmente sorprendentes. Eurodis, los campeones del Día de las Enfermedades Raras, demuestran esa idea en su vídeo sobre el Día de las Enfermedades Raras del…

Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Cystic Fibrosis Ehlers-Danlos Syndrome Rare Disease

Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…

Our I Run 4 Experience

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

The above photo is when Cole arranged a virtual race and Facetimed with Hannah. We were in Ohio walking while Cole and her friend Heidi ran in Wisconsin. We even…

How This Young Woman is Fighting 8 Years of Lyme Disease

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Lyme Disease Rare Disease

“Looking back to the years before being diagnosed, I remember that therapy helped a lot. But I sometimes wonder if I would have had those issues anyway or if it…

Who Will You Challenge for Lyme Disease Awareness?

Post author:Kristen Lord
Post published:May 27, 2016
Post category:Lyme Disease Rare Disease

Spread the word about Lyme with the Lyme Disease Challenge, then donate to help fight the disease! Take a bite. Share a fact. Pass it on! FACT: Lyme Disease has…

Mariana’s Medical Journey Part 3: Embracing Difference

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Pfeiffer Syndrome Rare Disease

This is the last segment of Mariana's medical journey written by Mariana's mother, Carolina. Click here for part one and here for part two. Before the three month check up…

Raise Your Hand If You’re Sure

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Lyme Disease Rare Disease

Okay, you guys, I got a boyfriend! I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know…

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este paciente con espondilitis anquilosante nos enseña que la locura puede ser buena

Post author:Patient Worthy Contributor
Post published:May 27, 2016
Post category:Ankylosing Spondylitis Rare Disease

La natación es no sólo un gran ejercicio en general, pero también es un ejercicio fantástico si usted está viviendo con espondilitis anquilosante. No es tan discordante para la columna…

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NOMI alias CINCA

Post author:Patient Worthy Contributor
Post published:May 26, 2016
Post category:CAPS Neonatal onset multisystem inflammatory disease Rare Disease

No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…

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Doctors Keep Missing this Debilitating Diagnosis… Why?

Post author:Erica Zahn
Post published:May 26, 2016
Post category:Ankylosing Spondylitis Rare Disease

Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…

Why Important Research Is Being Sold To The Highest Bidder

Post author:Farrah Fontaine
Post published:May 26, 2016
Post category:Cystinosis Rare Disease

Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…

What You Need to Know About Cystic Fibrosis

Post author:Patient Worthy Contributor
Post published:May 26, 2016
Post category:Cystic Fibrosis Rare Disease

Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…

A Short Poem For Rare Awareness

Post author:Kristen Lord
Post published:May 26, 2016
Post category:Rare Disease

One of the truest ways to help those with rare diseases is to make people aware of them. The more people who are aware, then more people can donate. The more…

Huntington’s Has No Cure, But There is Help Available

Post author:Erica Zahn
Post published:May 26, 2016
Post category:Huntington's disease Rare Disease

A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…

Rapid Response is the Best Response for Fighting MDS

Post author:Ronald Ledsen
Post published:May 26, 2016
Post category:Myelodysplastic syndromes Rare Disease Timely

In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…

Cystic Fibrosis Breakthrough at Case Western

Post author:Ronald Ledsen
Post published:May 25, 2016
Post category:Cystic Fibrosis Rare Disease

As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…

Team GB Trampoline Squad Highlight the Difficulty of Living with Cystic Fibrosis

Post author:Patient Worthy Contributor
Post published:May 25, 2016
Post category:Cystic Fibrosis Rare Disease

Press release: 24th May 2016 Breathe With Me Strawfie Challenge The Team GB Trampoline Squad are the latest in a fast-growing line of sporting stars and celebrities to back the ‘Breathe…

And so is that chainsaw massacre nobody likes to talk about, but whatever. Source: www.giphy.com Pixabay

Eff YOU, FH! See What This Summit is Proving

Post author:Kiki Jones
Post published:May 25, 2016
Post category:Familial Hypercholesterolemia Homozygous Familial Hypercholesterolemia Rare Disease

You know what they say—everything’s bigger in Texas. And this year’s FH Global Summit, located in sunny Dallas, will be bigger than ever. Nobel laureates as speakers? √ Intensive discussions among healthcare leaders? √…

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Acromegaly Research is More Important than Ever!

Post author:Erica Zahn
Post published:May 25, 2016
Post category:Acromegaly Rare Disease

Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…

Fun With Dogs Too- The Lyme Disease Challenge

Post author:Kristen Lord
Post published:May 25, 2016
Post category:Lyme Disease Rare Disease

The Lyme Disease Challenge can be fun for everyone! Even dogs can make some pretty funny faces and help raise awareness. Get your four legged friend in on the action!…

When Mom is Sick

Perdiendo el tren acerca del AEH

Every Kid With Cystinosis Needs a Cool Aunt Like This

How Aware Are You This Lyme Disease Awareness Month?

New Cystic Fibrosis Screening

Las manos elocuentes dicen mas que las palabras en este video sobre las Enfermedades Raras

Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

Our I Run 4 Experience

How This Young Woman is Fighting 8 Years of Lyme Disease

Who Will You Challenge for Lyme Disease Awareness?

Mariana’s Medical Journey Part 3: Embracing Difference

Raise Your Hand If You’re Sure

este paciente con espondilitis anquilosante nos enseña que la locura puede ser buena

NOMI alias CINCA

Doctors Keep Missing this Debilitating Diagnosis… Why?

Why Important Research Is Being Sold To The Highest Bidder

What You Need to Know About Cystic Fibrosis

A Short Poem For Rare Awareness

Huntington’s Has No Cure, But There is Help Available

Rapid Response is the Best Response for Fighting MDS

Cystic Fibrosis Breakthrough at Case Western

Team GB Trampoline Squad Highlight the Difficulty of Living with Cystic Fibrosis

Eff YOU, FH! See What This Summit is Proving

Acromegaly Research is More Important than Ever!

Fun With Dogs Too- The Lyme Disease Challenge

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

Let’s Work Together!

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