Picture this: A desperately ill man with myelodysplastic syndrome in his seventies is fighting for his very life. A beautiful young woman in a foreign country is going about her everyday life.…
You’ve heard the saying, it takes a village to raise a child? Well, as much as the fiercely independent may chafe at the suggestion, it’s true: raising, teaching, and protecting…
These days Frank drives around to help others with trigeminal neuralgia. He seeks to raise awareness while comforting those who are living with the condition. Before Frank was diagnosed, he…
Addilynne is a 3-year-old with living with a disease that affects her muscle movement and strength: spinal muscular atrophy (SMA). But Amanda, her mother, states that SMA is an acronym for…
For anyone out there who has climbed a mountain, you know one of the universal truths of all monumental tasks: A mountain always looks bigger when you’re standing at the…
Regardless of whether labor is long or short, whether it is hard or easy, whether a baby is born vaginally or by cesarean, most parents recall the first hours and…
As much as it pains me as a “word guy" to admit it, music is probably unparalleled among all the other arts in its ability to motivate action and change…
Look closely. A long shadow may be clouding your future. It's the shadow cast by the pain and suffering in your past—the parent who wasn't there, the boss who humiliated…
Who would have thought that a classic novel came about because a student accidentally skipped a page in his test booklet for a final exam essay? The person charged with…
One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I…
In India, one in 40 people carry the gene for Spinal Muscular Atrophy. If both parents carry the gene, then there is a 25 percent chance that the child may…
Malik, 21, has been living with sickle cell anemia since he was born. Sickle cell anemia is a disease in which the body makes red blood cells in an abnormal…
Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…
One of the hardest parts of living with a rare or chronic condition such as hereditary angioedema (HAE) is being told “but you don’t look sick!”—even when you feel like…
Our children bring us so much laughter and joy. Spending lots of quality time with our kids is proven to be good therapy; they benefit from wholesome interaction with their…
Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…
Leathia Boyd is a 38-year-old woman, mother, and wife living with sickle cell anemia. She's also an advocate and has been one for more than six years. It all started when she joined…
June-September is wedding season. One of the most frequented topics of conversation among friends is weddings. It seems I'm at a stage when no matter who I'm with or what…
Dancers have amazing muscle control. Through hard work and practice, they learn to make the tiniest movements precisely. So imagine the terror former dancer Emily Thompson, then only 20, felt…
If you had the opportunity to make a wish, what would it be? Would it change if your child had Lennox-Gastaut? I can think of a few wishes I'd make,…
One of the most popular brands of literature (yes, people still buy books; some even buy them the old fashion way at a bookstore) is the standby classic: mystery. It…
Wilson disease is a rare genetic disorder. What does it cause? Well, copper begins to build up in the liver and brain, sometimes to a dangerous degree. One young boy in India…
A firefighter, also known as a fireman, is a highly skilled man or woman who works to combat and extinguish fires. They also take steps to prevent fires, act as…
Kyrus Rogers a former security guard was supposedly misdiagnosed when an emergency room physician apparently failed to run diagnostics for transverse myelitis (TM). Rogers, once a healthy, athletic 30-something, is…
A little pain usually is a good thing. It's our alarm system. It's our body's way of saying, "Hey, that's hot... Get away before it hurts you!" However, when the…
© Copyright 2024 Patient Worthy
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.
