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Blog Review

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Fighting Familial Hypercholesterolemia with Food
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Fighting Familial Hypercholesterolemia with Food

  • Post author:Corbin Wood
  • Post published:October 6, 2018
  • Post category:Familial Hypercholesterolemia

If you think you have to be middle-aged or older to check your cholesterol, think again. Laura Livesey is a relatively young blogger (you can check out her blog, Confidence…

Continue Reading Fighting Familial Hypercholesterolemia with Food
Hemophilia Hugs: When Virtual Venting and Support May be Best
[Source: pixabay.com]

Hemophilia Hugs: When Virtual Venting and Support May be Best

  • Post author:Patient Worthy Contributor
  • Post published:November 1, 2017
  • Post category:Hemophilia B/Rare Disease

A perfectly coifed woman-child cuts you off on the way to the YMCA. Your children are copping some major attitude. Your spouse forgets to grab milk for dinner. Do you…

Continue Reading Hemophilia Hugs: When Virtual Venting and Support May be Best
Three Helpful Tips for Thriving with Phenylketonuria
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Three Helpful Tips for Thriving with Phenylketonuria

  • Post author:Octavia Walker
  • Post published:September 13, 2017
  • Post category:Phenylketonuria/Rare Disease

Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…

Continue Reading Three Helpful Tips for Thriving with Phenylketonuria
Medical Marijuana Movement Gets Shot in the Arm
[Source: pixabay.com]

Medical Marijuana Movement Gets Shot in the Arm

  • Post author:Al Pendleton
  • Post published:August 30, 2017
  • Post category:Dravet Syndrome/Glaucoma

Proponents of medicinal marijuana got a little more ammunition earlier this year according to a blogger on Scienceblogs. However, some have claimed that cannabinoids cure everything from glaucoma to gallbladder,…

Continue Reading Medical Marijuana Movement Gets Shot in the Arm
One Woman Overcoming Ulcerative Colitis to Run Boston Marathon
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One Woman Overcoming Ulcerative Colitis to Run Boston Marathon

  • Post author:Al Pendleton
  • Post published:July 19, 2017
  • Post category:Rare Disease/ulcerative Colitis

We like it when people achieve great things despite insurmountable obstacles. This is not unique to living in the modern world or being an American; however, this is a big part…

Continue Reading One Woman Overcoming Ulcerative Colitis to Run Boston Marathon
Tamara’s Recovery from Guillain–Barré Syndrome

Tamara’s Recovery from Guillain–Barré Syndrome

  • Post author:Nia
  • Post published:May 22, 2017
  • Post category:Guillain Barré syndrome/Rare Disease

Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré Syndrome. When Tamara received her Guillain–Barré Syndrome…

Continue Reading Tamara’s Recovery from Guillain–Barré Syndrome
Yolanda Foster: Un abogado de la enfermedad de Lyme bienvenida

Yolanda Foster: Un abogado de la enfermedad de Lyme bienvenida

  • Post author:Patient Worthy Contributor
  • Post published:December 13, 2016
  • Post category:Lyme Disease

No soy un fan de la televisión de la realidad. Pero yo soy un fan cojonudo de Yolanda Foster, un ama de casa real de Beverly Hills. Aunque ella y…

Continue Reading Yolanda Foster: Un abogado de la enfermedad de Lyme bienvenida
Remarkable Ketogenic Diet is Hailed Tremendous by Mom
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Remarkable Ketogenic Diet is Hailed Tremendous by Mom

  • Post author:Alisha Stone
  • Post published:November 16, 2016
  • Post category:Epilespy/GLUT1 DS

My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…

Continue Reading Remarkable Ketogenic Diet is Hailed Tremendous by Mom
Si usted vive con una enfermedad y nunca se le preguntó “¿Por qué?” Tienes que leer esto
qimono / Pixabay

Si usted vive con una enfermedad y nunca se le preguntó “¿Por qué?” Tienes que leer esto

  • Post author:Patient Worthy Contributor
  • Post published:October 9, 2016
  • Post category:Dystonia

El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del calendario del mes de la conciencia de la distonía. Si no lo ha…

Continue Reading Si usted vive con una enfermedad y nunca se le preguntó “¿Por qué?” Tienes que leer esto
IPF Today Blog Review

IPF Today Blog Review

  • Post author:Farrah Fontaine
  • Post published:August 2, 2016
  • Post category:IPF/Rare Disease

It's no secret that a diagnosis of idiopathic pulmonary fibrosis, or IPF, can lead to a lot of STRESS. Of course, what is not good for chronic illnesses like IPF?…

Continue Reading IPF Today Blog Review
Compassion is the Best Drug for the Body and the Soul
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Compassion is the Best Drug for the Body and the Soul

  • Post author:Patient Worthy Contributor
  • Post published:May 6, 2016
  • Post category:Myasthenia Gravis/Rare Disease

There are treatments out there to help manage living with Myasthenia Gravis (MG). Whether your infant was born with Congential Myasthenia Gravis or you are an adult who showed a positive result…

Continue Reading Compassion is the Best Drug for the Body and the Soul
How to Survive in a Blog-Eat-Blog World: Be Like Sjodry & Parched

How to Survive in a Blog-Eat-Blog World: Be Like Sjodry & Parched

  • Post author:EmpatheticBadass
  • Post published:April 19, 2016
  • Post category:Rare Disease/Sjogren's Syndrome

Nothing beats a live, in-person connection when it comes to feeling understood—especially when you just want to meet someone who understands your disease because, “YOU HAVE IT, TOO!?!” But, let’s…

Continue Reading How to Survive in a Blog-Eat-Blog World: Be Like Sjodry & Parched
5 lecciones que nos trae esta madre con fibrosis quística en el 2016
Pixabay

5 lecciones que nos trae esta madre con fibrosis quística en el 2016

  • Post author:Patient Worthy Contributor
  • Post published:April 14, 2016
  • Post category:Cystic Fibrosis/Rare Disease

La familia Corr ha tenido un año difícil. Resistente, seguro, pero igual de feliz. Ellos han estado adaptando a la vida con su hija mayor año Harriet. Poco después del…

Continue Reading 5 lecciones que nos trae esta madre con fibrosis quística en el 2016
This Amazing Woman Is The New Face Of Narcolepsy
Source: www.julieflygare.com

This Amazing Woman Is The New Face Of Narcolepsy

  • Post author:Erica Zahn
  • Post published:March 22, 2016
  • Post category:Narcolepsy/Rare Disease

When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…

Continue Reading This Amazing Woman Is The New Face Of Narcolepsy

Si vives con una enfermedad y te has preguntado “¿Por qué?” Tienes que leer esto

  • Post author:Patient Worthy Contributor
  • Post published:March 8, 2016
  • Post category:Dystonia

El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del Mes de Concientización Distonía. Si no lo ha hecho ..... #signtheDAMpetition Blogger invitada: Pamela…

Continue Reading Si vives con una enfermedad y te has preguntado “¿Por qué?” Tienes que leer esto
She Spoke Into Her Answering Machine, What Played Shook Her

She Spoke Into Her Answering Machine, What Played Shook Her

  • Post author:Erica Zahn
  • Post published:December 28, 2015
  • Post category:Dystonia/Rare Disease

Have you ever heard your voice on a recording and thought, "Is that what I really sound like?" You rehearse exactly what you want to say, repetitively hitting the restart…

Continue Reading She Spoke Into Her Answering Machine, What Played Shook Her

Yolanda Foster: A Welcomed Lyme Disease Advocate

  • Post author:Patient Worthy Contributor
  • Post published:December 9, 2015
  • Post category:Lyme Disease

I am not a fan of reality television. But I am a helluva fan of Yolanda Foster, a Real Housewife of Beverly Hills. Though her and I probably don't have…

Continue Reading Yolanda Foster: A Welcomed Lyme Disease Advocate
Here’s Something About Bubble Boy That You Never Knew

Here’s Something About Bubble Boy That You Never Knew

  • Post author:Ronald Ledsen
  • Post published:October 22, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…

Continue Reading Here’s Something About Bubble Boy That You Never Knew

If You Live With a Disease and Ever Asked “Why?” You Need to Read This

  • Post author:Rebekah
  • Post published:September 23, 2015
  • Post category:Dystonia

Time is running out! Join us before September ends to make the ninth month of the calendar Dystonia Awareness Month. If you haven't already..... #signtheDAMpetition Guest Blogger: Pamela Sloate provides…

Continue Reading If You Live With a Disease and Ever Asked “Why?” You Need to Read This

Featured


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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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