As parents, we want to protect our children from harm and keep them safe. So when your child is suffering from a rare metabolic disorder, it's natural to feel helpless.…
The Alpha-1 Foundation has a website dedicated to Alpha-1 patients and caregivers. It offers a wealth of information and resources about about the disease. Alpha-1 Antitrypsin Deficiency (Alpha-1) is a…
Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…
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…
Some diseases are so rare that it feels like researchers have given up on finding a cure. So was the case with Mucopolysaccharidos 1 (MPS I) and one such young…
When is acromegaly like a scene from a movie? I know it's a stretch, but bear with me. I rarely go to the movies, you know, in a movie theater.…
There is support out there for people living with and/or affected by Waldenstrom macroglobulinemia (WM). Thankfully, according to Patient Worthy Partner International Waldenstrom’s Macroglobulinemia Foundation (IWMF,) a gap may be bridged…
Cystic fibrosis while still rare, is one of the world’s most common genetic disorders. There are more than 30,000 people in the United States that live with cystic fibrosis. Patients…
I know many people who would love to go to a local support group, but there either isn’t one in your area or you are not well enough to attend.…
Alkaptonuria, a rare genetic metabolic disorder resulting from excess homogentisic acid in the body, affects all kinds of people, though symptoms tend to become more severe in males. Symptoms include:…
We sometimes hear about iron storage problems, but what does that actually mean? Genetic hemochromatosis (GH) is, as the name clearly states, a genetic disease. That means it's one that…
There's an app for everything right? It seems like every day a new app is being created to make life easier, for better or for worse. In the case of…
Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…
The Pediatric Stroke Warriors were formed in 2015 and have thus grown into the biggest childhood stroke nonprofit out of the Pacific Northwest Region. Their mission is to strengthen communities…
National Drug and Alcohol Facts Week is the last week of January. American Heart Month is February. And October is the sentinel month for people with achondroplasia aka dwarfism. October…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
Suffering alone with a rare, chronic condition is a terrible thing. But thanks to the National Porphyria Registry people living with this vexing disease have a way to stand up,…
Not being able to ride a bike, or open the door to your home, or reach a light switch is frustrating. For anyone with achondroplasia, these are an everyday annoyance…
You are what you eat. We’ve all heard it before. Whether it was in a middle school science class or high school health class, you know how important it is…
Imagine having a couple more hours until you have to get up for work, but can’t fall asleep. Or what about feeling sleepy when everyone around you is waking up?…
For patients, caregivers, healthcare providers, and anyone interested in learning more about liver diseases, there is a website called Focus. This website is organized by CLDF, which stands for Childhood…
When someone you love has a rare disease, it can be devastating. But every day more information is being amassed to help combat these often deadly conditions. One of the…
Facebook can be a real time suck. Especially, when you’re looking for a distraction or for an old high school flame. However, if you’re looking for an informational, inspirational Facebook…
I like nonsense, it wakes up the brain cells. Fantasy is a necessary ingredient in living, It’s a way of looking at life through the wrong end of a telescope.…
If you or someone you love has bronchiectasis or COPD, you should be aware of the risk of alpha-1 antitrypsin deficiency, or A1ATD. Alpha-1 antitrypsin disorder is an inherited condition…
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