This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…
My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…
above image by Sandro Georgi Photography In honor of Mother's Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease…
above photo by Sandro Georgi Photography Kristina was symptomatic when she was around 12 or 13 but she wasn’t diagnosed with narcolepsy until over a decade later at 24. She thinks…
Patient Worthy had the privilege of sitting down with Kristina, a wife, mother and student, and hearing about her journey with Narcolepsy. Kristina found out she had narcolepsy and had…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
When Patient Worthy met with Kristina to hear about her journey with narcolepsy she was happy to put her story out there for more reasons than one. She was hopeful…
TLC launched a new show less than a week ago that is of particular interest to the rare disease community. Their series “Two in a Million” builds off a concept…
Unfortunately, stigma is something many patients are all too familiar with. Patients with chronic pain may be labeled as drug seekers. Patients who occasionally need assistance walking and sometimes don't…
Kristina is the epitome of resilience in the face of Narcolepsy. Kristina was undiagnosed for years and was told her symptoms could be explained by depression and laziness. Now she…
After years of being undiagnosed and even called lazy, Kristina finally learned she had narcolepsy. She's still learning how to best manage her life, with a husband and two kids,…
Congratulate this Mom- She knew something was wrong. She went through 19 specialists in 4 years. She eventually got a diagnoses. Her son, had Syngap1, a very rare, gene based,…
Nolan is a rare dad not only living with, but running with dystonia. Patient Worthy has had the privilege of meeting him, working with him in a recent photo shoot,…
April 15th marks the deadline for the FDA to approve or deny approval for Mycapssa, a drug created by biotech company Chiasma. Mycapssa is pending approval for the treatment of…
I woke up bright and early last Monday in Bethesda, Maryland. As soon as my eyes were open I was excited...I'd be spending Rare Disease Day at NIH. I…
Wednesday of Rare Disease Week was Lobby Day! Patients, parents and advocates "stormed Capitol Hill" after a Lobby Day breakfast with speakers that included the newly confirmed FDA Commissioner, Robert M.…
Patient Worthy is celebrating March as Narcolepsy Awareness Month! Narcolepsy is far too often misdiagnosed and left undiagnosed for years at a time. With more awareness will be more correct,…
above photo by Sandro Georgi Photography Imagine that your son was suddenly falling asleep all the time; around the house, at school, during dinner, and that when you took him to…
My story starts back when I was around 18 years old, almost 20 years ago. At the age of 18, I had my first DVT, deep vein thrombosis (blood clot)…
It can be hard sometimes for your friends, loved ones, and peers to know what to say when you’re dealing with chronic illness. “Feel better soon” Doesn’t really work. There…
Justin Caba sat and watched a basketball game. His mind however, was far from the friendly competition. Watching his favorite players, all far taller than average, made him wonder about…
Last week at the 4th Systemic Sclerosis World Congress the results of a study conducted by University College London and Actelion Pharmaceuticals were presented. The findings? A sign of hope.…
Meet an incredible advocate for Huntington’s disease. Chasity Boatman grew up witnessing the tragic effects of this degenerative and fatal disease first hand and has now become a dedicated and…
Let's face it, it's not a secret that phones and tablets are taking over our lives! Even the littlest among us are showing a shocking attachment to the glowing screens.…
The Webster dictionary defines motivation as, "a force or influence that causes someone to do something." So that leads us to ask... What's the force that causes you to take…
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