One of the toughest parts of living with Sjögren’s syndrome is you can’t always toddle down the road to your local Sjögren’s patient get-together. There are no flashing neon signs…
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…
When she was two years old, Terry was diagnosed with tyrosinemia, a rare metabolic disorder makes the body unable to break down the amino acid tyrosine. Tyrosine is an important building block of…
First things first. If you're in the U.S., Sjogren's is pronounced thus: SHOW-grin's. And because the physician it's named after was Swedish, there should be little dots above the "o": Sjögren's.…
It's hard to relate. It's hard to relate to people trying to relate. I always like to say, "Perspective is reality." Now, you're probably thinking, No, reality is reality. Yes,…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
There's a pretty large handful of primary immunodeficiency disorders, but we're only going to focus on one: chronic granulomatous disease (CGD). I know what you're thinking... What the heck is…
...But you didn’t order fries and you certainly don’t want the combo meal! I recently read about Kelly du Plessis, a Mom in South Africa whose 6 year old son…
Not many people would consider a heart attack to be a positive event, but for David Collings that's exactly what it turned out to be. While out walking with his…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Orphan Product Extensions Now Accelerating Cures and Treatments Act of 2015 needs your help! Via Congress.gov the Open Act stands to accelerate cures and treatments for rare disease and it could quite possible double…
Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…
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…
The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…
Last year, the International Rare Diseases Research Consortium (IRDiRC) has established a task force with the objective of promoting Patient-Centered Outcome Measures in the area of rare diseases. What it means is this: The conversation…
So, your child has just been diagnosed with common variable immunodeficiency, or CVID. You probably have A LOT of questions, which is only normal. Doctors can be a great resource when it…
Primary Immune Deficiency Diseases, or PIDDs, affect approximately half a million Americans, but there's a twist: There are over 200 different PIDDs, all of which are genetically passed along. Finding…
How much do you know about Gaucher disease? If you live with the condition or know someone who does, you might know a lot. But have you ever tested your knowledge?…
Si alguna vez hubo una "girl next door", Ashley Coleman seria la manifestacion de esta idea, una mujer joven y bella, de ojos brillantes, rubia y muy activa! Ella tiene…
Health insurance. Ew, right? Totally. Health insurance is WHACK. Why you gotta know about health insurance right now? Mkay, I'm done with that. How was it, though? The lingo? Did I appeal…
Severe combined immunodeficiency (SCID)—one of the many forms of primary immune deficiencies. You may also know it as the "Bubble Boy" disease. Here at Patient Worthy, we've talked a…
When someone has too much human growth hormone, or GH, which is produced by the pituitary gland, the most frequent outcome is a disorder called acromegaly. It's debilitating, painful, and disfiguring--and…
When it comes to getting a rare disease diagnosis, not one person will ever tell it you it was a walk in the park. As Kathryn (a gold level patient…
Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Have you ever thought about blinking? Right now, try not to blink for as long as you can... You blinked, didn't you? That's the function of an involuntary muscle. You…
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