Rare Disease – Page 256 – Patient Worthy

There Is Hope For Those With HAE.

Post author:Kristen Lord
Post published:May 17, 2016
Post category:HAE Rare Disease

There Is Hope For Those With HAE. The more you know, the more normal of a life you or your loved one can lead. Check out haea.org and don't let HAE…

Immune Globulin? Is That a Villain From Star Trek?

Post author:Patient Worthy Contributor
Post published:May 17, 2016
Post category:Immune Thrombocytopenic Purpura Rare Disease

From the comfort of the @PatientWorthy couch, we caught another RARE feature on TV! Chicago Fire Fans Won't See Otis Fighting Fires Until His Platelets are Balanced A few episodes…

You’ll Love How They’re Finding A Cure For Muscular Dystrophy!

Post author:Erica Zahn
Post published:May 17, 2016
Post category:Duchenne Muscular Dystrophy Rare Disease

For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…

How to Solve the Rare Disease Treatment Problem

Post author:James Ernest Cassady
Post published:May 17, 2016
Post category:Rare Disease

As most readers of this site are probably aware, a “rare disease” is classified in the United States as one that affects fewer than 200,000 people. It’s estimated there are…

Remarkable Generosity Scores Big For Boy With Cystinosis

Post author:Winnie Nash
Post published:May 17, 2016
Post category:Cystinosis Rare Disease

Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…

Rob’s Acromegaly Diagnosis

Post author:Rebekah
Post published:May 17, 2016
Post category:Acromegaly Rare Disease

In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…

May 16th Is HAE Day – Participate!

Post author:Kristen Lord
Post published:May 16, 2016
Post category:HAE Rare Disease

May 16th is HAE Day. Participate in raising awareness by joining the campaign to cover the world with smiles.

Aún no hay un diagnóstico? podría Watson ser la respuesta?

Post author:Patient Worthy Contributor
Post published:May 16, 2016
Post category:Rare Disease

La edad de las máquinas, estamos en ella! La tecnología se ha hecho cargo. Hace algunas décadas, cuando alguien hablaba de la tecnología, pensado en Orwell novela 1984, las películas…

Pixabay

Life Improves for 14-Year-Old With Dystonia

Post author:Winnie Nash
Post published:May 16, 2016
Post category:Dystonia Rare Disease

When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion? Often that’s the case, but Cooper Wilson,…

Pixabay

Young Boy with DMD Makes Wish to Become Ant-Man, Not What You’d Expect

Post author:EmpatheticBadass
Post published:May 16, 2016
Post category:Duchenne Muscular Dystrophy Rare Disease

If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…

Source: pixabay.com

Sarcoidosis Treatment May Be On the Cusp of Improvement

Post author:Erica Zahn
Post published:May 16, 2016
Post category:Rare Disease Sarcoidosis

Sarcoidosis is caused by tiny granulomas forming most commonly in the lungs or lymph nodes and eyes. Doctors believe it is the result of the immune system trying to fight…

Source: www.flickr.com

Why Pilates Is The Lyme Disease Secret You Need To Know

Post author:Lady Kehveen Abernathy
Post published:May 16, 2016
Post category:Lyme Disease Rare Disease

What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…

Pixabay.com

How to Know if It’s “Just Back Pain” or Ankylosing Spondylitis

Post author:EmpatheticBadass
Post published:May 16, 2016
Post category:Ankylosing Spondylitis Rare Disease

An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…

https://pixabay.com/en/christmas-cake-almond-cake-dining-1584252/

10 cosas más baratas que los medicamentos para el de AEH

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:HAE Rare Disease

En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…

Looking at an Old CF Problem in a New Way

Post author:D London
Post published:May 13, 2016
Post category:Cystic Fibrosis Rare Disease

Like all genetic disorders, there aren’t many silver linings to having cystic fibrosis. The best we can say is that life expectancy for people with CF has improved thanks to…

Editor’s Choice: Mother’s Day Rare Moms, Lyme Disease Awareness and the Strawfie Challenge!

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:Cystic Fibrosis Lyme Disease Rare Disease

Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…

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Schnitzler Syndrome: It’s Not Always Easy to Pinpoint

Post author:Erica Zahn
Post published:May 13, 2016
Post category:Rare Disease Schnitzler Syndrome

Do you have hives (or a rash) that will not go away? And maybe inflammation of your joints, recurrent fevers, and perhaps enlarged lymph nodes? If you answered yes, you may…

(STURBRIDGE MA 031116)-Trish McCleary poses with her laptop featuring Senate Bill S502 Sponsored by Senator Anne Gobi, mandating that insurance companies cover the cost of treatment for Lyme disease. Herald photo Chris Christo

Bloody Battle Rages Over Lyme Disease. Here’s How to Stop It!

Post author:Alisha Stone
Post published:May 13, 2016
Post category:Lyme Disease Rare Disease

For years, patient advocates and insurance companies have been outraged and fighting about a Lyme disease bill in Massachusetts that is controversial. The proposed bill, if passed, would provide long-term…

[Source: Pixabay.com ]

5 Things You Didn’t Know About Familial Hypercholesterolemia

Post author:PW Blogger
Post published:May 13, 2016
Post category:Familial Hypercholesterolemia Rare Disease

1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…

There is Strength in Going Unrecognized

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:Rare Disease

This 13-Year-Old Girl Will Make You Rethink CVID

Post author:Erica Zahn
Post published:May 13, 2016
Post category:CVID Rare Disease

Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…

Pixabay

My Lyme Disease Playlist

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:Rare Disease

I had a sneaking suspicion that I was sick before any doctors diagnosed me with chronic, late-stage Lyme disease. The following playlist pretty much spells out my journey from feeling…

CVID Awareness Meme

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:CVID Rare Disease

The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community. "When you hear hoofbeats think horses...not zebras."

Artista con ICV pinta para crear conciencia

Post author:Patient Worthy Contributor
Post published:May 12, 2016
Post category:CVID Rare Disease

Es a través del arte que Rebecca Zook gestiona los desafíos físicos y emocionales de vivir con una enfermedad crónica. Después de 3 años de ver decenas de médicos especialistas,…

Pixabay

What Your Mother Never Told You About High Cholesterol

Post author:Erica Zahn
Post published:May 12, 2016
Post category:Familial Hypercholesterolemia Homozygous Familial Hypercholesterolemia Rare Disease

Every so often, I hear someone grumpily complain about their high cholesterol and what they're doing to get it under control. The great majority of people will respond to a change…

There Is Hope For Those With HAE.

Immune Globulin? Is That a Villain From Star Trek?

You’ll Love How They’re Finding A Cure For Muscular Dystrophy!

Remarkable Generosity Scores Big For Boy With Cystinosis

Rob’s Acromegaly Diagnosis

May 16th Is HAE Day – Participate!

Aún no hay un diagnóstico? podría Watson ser la respuesta?

Life Improves for 14-Year-Old With Dystonia

Young Boy with DMD Makes Wish to Become Ant-Man, Not What You’d Expect

Sarcoidosis Treatment May Be On the Cusp of Improvement

Why Pilates Is The Lyme Disease Secret You Need To Know

10 cosas más baratas que los medicamentos para el de AEH

Looking at an Old CF Problem in a New Way

Editor’s Choice: Mother’s Day Rare Moms, Lyme Disease Awareness and the Strawfie Challenge!

Schnitzler Syndrome: It’s Not Always Easy to Pinpoint

Bloody Battle Rages Over Lyme Disease. Here’s How to Stop It!

5 Things You Didn’t Know About Familial Hypercholesterolemia

There is Strength in Going Unrecognized

This 13-Year-Old Girl Will Make You Rethink CVID

My Lyme Disease Playlist

CVID Awareness Meme

Artista con ICV pinta para crear conciencia

What Your Mother Never Told You About High Cholesterol

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