Anyone born before 1955 probably remembers exactly where they were when President John F. Kennedy (JFK) was shot. I've heard people reminisce about that moment right down to what they…
When tasked with delivering a life-changing diagnosis, it’s refreshing to hear that there are more doctors than not who understand the importance of how to share turning point news. If…
Concientización ... Activismo... Abogacía Estas son sólo algunas de las palabras que usamos para exigir medidas a cualquier persona ya sea los líderes mundiales, las industrias, los amigos o la…
Some auto-inflammatory disease symptoms are triggered by colder temperatures. Systemic Auto-inflammatory Disease Support (SAID) has several winter tips for people who suffer from these diseases. Examples of these diseases are…
You're sitting across the desk from your doctor having just been told you have myasthenia gravis, or MG. Suddenly she starts dropping words like "diplopia" and "acetylcholine." She looks expectantly at…
I don’t know about you, but on very cold days, which seems to be the norm these days (even in the South), I crave hot foods like a hearty soup…
Her name is Katelynn. Junior in high school. Third-year starter for her volleyball team, and a good one at that. She has it made... except for one thing. She suffers…
Recently, while looking for information about precocious puberty, I discovered a very cool site. It has a surprising, on-the-surface name: Hippo Education Blog (Apparently, Hippo’s short for Hippocrates, the Greek…
Hanna Gully era una niña con un sueño: que un día iba a viajar por el mundo, y se atreven a hacer todas las cosas que había establecido su mente…
Robert comenzó su misión de dar a conocer la fibrosis quística después de conocer a alguien que había vivido con ella durante cuarenta y un años. Como él mismo dice;…
En los últimos años, Casey Higgins, una mujer de 27 años de edad, Ohio, ha requerido de oxígeno suplementario 24/7 para ayudarle a respirar. Diagnosticada con fibrosis quística, enfermedad genética,…
Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…
Childhood is a time for innocence, exploring, and fun. It has always been said that children grow up too fast and each moment should be treasured. First words, first steps,…
Imagine sitting in a doctor's office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness. In this paralyzing moment, whatever was consuming your life minutes before…
When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach. There are a lot of variables--that's what makes these conditions so difficult to diagnosis,…
Have you looked through Google for online quizzes? Well, let me just tell you... the extensive options may blow your mind. One that I found very interesting (there were plenty…
Si usted tiene narcolepsia, somnolencia diurna excesiva, y / o cataplexia, usted sabe lo difícil que puede ser para funcionar en el tiempo del "mundo real". Y mientras que los…
When most people think of inflammatory diseases, they tend to think of conditions that affect the joints, the skin, or organs in the digestive track. But imagine if the inflammation…
For those who watch the efforts to combat chronic diseases from the sidelines, it’s easy to see the war as one where humans are the underdogs facing a huge, formidable…
Gemma Daysh, a mum from Portsmouth, Hampshire was featured on BBC South Today on 3rd January, 2017 to highlight the fight faced by the cystic fibrosis community to gain access…
When you or a loved one just receive a diagnosis of Gaucher disease (GD) it’s only natural to feel distressed, concerned, and worried about the future. Undoubtedly, you have many…
Did you know that we have chemicals in the brain as powerful as drugs for pain, depression, anxiety, and other conditions? Among them are neurotransmitters called endorphins, serotonin, oxytocin, and…
Living with a chronic illness is not an easy task. There are obstacles that have to be faced daily. My oldest daughter has a severe peanut/tree-nut allergy that we discovered…
En esta cuenta, desde Philly.com, el Dr. Thomas Klein, alergólogo e inmunólogo, describe su problema. Un misterio se había encontrado en su camino que no se creía capaz de resolver.…
There’s an interesting blog post you’ve got to check out—especially if you’ve been feeling guilty about telling people “No” while living with or caring for a loved one who has…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
