2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
Part 1: A Terrible Itch—and Unspeakable Loss Everyone knows that I am an autoimmune mess due to an invisible chronic illness comprised of multiple autoimmune diseases. Here is a part of…
Pulmonary Hypertension is a rare and debilitating condition that can prove fatal in as little as three years unless specialized treatment is given. The Pulmonary Hypertension Association has developed an accreditation process…
Soy Charlie, un joven de 27 años de edad, trabajando en marketing digital en Auckland, Nueva Zelanda. Soy un gran fan de un buen café, buena cerveza, buen vino, buena…
Happy First Week of February! Do you have a rare disease and find art as an outlet for you? Are you always fighting to find more ways to treat your…
Recently I have been fortunate enough to be tested for remission from chronic Lyme disease. For those of you who haven't heard of the latest Lyme Antigen Test, it uses Nanotrap®…
Conozca a Samanta. Ella ha estado luchando contra una increíble cantidad de síntomas desde principios de 2012. Ella está actualmente diagnosticada con la enfermedad celíaca, colitis ulcerosa, gastritis, neuropatía autonómica,…
Mi nombre es Benjamin. Soy el padre orgulloso de un sabueso que me encanta tomar en caminatas. Soy un jugador y una cabeza armario metálico. Estoy 6'2 "y pesa 215…
Patient Worthy recently asked the President of the Acromegaly Association Jill Cisco, what it felt like to have acromegaly. Below is her response. Acromegaly is a disease that affects a person…
Conoce a Hannah, no puede no darse cuenta de todo lo que ella lucha con mirarla. Ella tiene doce años de edad. Esta es #InvisibleFight de Hannah Con Osteodistrofia hereditaria…
Are you an adult with isolated cervical dystonia? Wake Forest (Winston Salem, NC) is running a clinical trial of a new botulinum toxin. For more information click here. Or contact:…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es la historia #myinvisiblefight…
To read part 1 of Lisa's post, click here. These are some of my favorite online support for just about anything you need: Have a basic question? These forums are…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es #myinvisiblefight. En 2002, colgué…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know: 1. They call us Snowflakes because none of our symptoms are…
Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…
Soy Carla Fairchild. Tengo cuarenta y siete años, y la familia y la moda decir todo para mí; son yo. Ambos son mi amor, mi vida y mi pasión. Ser…
Fact: I donated blood before I knew I had Lyme disease, possibly contaminating whoever recieved my donation. I immediately felt guilty once I learned of my diagnosis, even though I had…
2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st Mark your calendars, reserve your hotel room and put a price alert on Kayak.com to attend the Bi-Annual conference of the Acromegaly Community.…
Soy Caroline McCarry. Soy una hija y un amigo; una hermana y un primo; un panadero y un escritor; una animadora y una persona que ha sufrido de TOC y…
Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
Rare Disease Day 2016 is almost upon us! Rare Disease Day is an international movement organized by Eurordis and supported by 41 Official Global Partners. Whether official or not- Patient Worthy…
Nancy is a breast cancer patient and these are five lessons she's learned throughout her treatment, applicable to anyone who has faced the adversity of being a patient: Attitude of gratitude.…
CYSTIC FIBROSIS PATIENTS VOTE FOR ALTERNATIVES TO TRADITIONAL TREATMENT CysticLife partners with researchers at Mayo Clinic to study if exercise can replace therapy 1x per day Phoenix, AZ: Fed…
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