Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
Gaucher, considered a rare, life-threatening disease, affects 1 in every 40,000 to 60,000 individuals, and in most cases, the disease is misdiagnosed, which is just what happened to 18-month-old Tamara…
“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.” Jo was one of…
In every great mystery novel, there's a code that needs to be cracked so the protagonist can triumph in the end. When it comes to medicine, that code is the…
On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…
It seems like everyone and their mom has a GoFundMe page for something or other: Want someone else to pay for your trip to New York? GoFundMe. Jumped off a…
Selfless. Alli Williams is selfless. The 17-year-old received an MPS I diagnosis as a baby. Unlike many kids with MPS, she was lucky enough to receive a bone marrow transplant--something she doesn't take lightly.…
While his peers were getting learners’ permits and homecoming tickets, 16-year-old Conner Vollmer was getting an unexpected diagnosis of myelodysplastic syndrome (MDS). The pre-cancerous condition is rare, and even more…
For those unfamiliar with it, mucopolysaccharidoses (MPS) is a wicked, wicked disease. It comes in a couple of different forms, but the form one little boy lives with is MPS II,…
As if you needed further proof that the human spirit can accomplish incredible things, here’s a great story from “across the pond.” In 2012, 15-year-old British student Jessica Gillatt was…
In 2013, the British Lung Foundation (BLF) released a Patient Charter for people living with IPF, or idiopathic pulmonary fibrosis. In it, they outline the five basic rights of people with…
San Angelo Live reports Keelie Brydson first noticed something was wrong in the fourth grade when, she says, "my eyelid would be really droopy." Turns out that Keelie has myasthenia…
Jeff Joseph. Record Spotlight reports he’s not like every 24-year-old trying to figure their way through this so-called “real world.” He’s different—in challenging ways and in freakin’ cool ways. Joseph…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…
The world was his audience, and everyone was watching. It was time to say "I have Idiopathic Pulmonary Fibrosis" If you are like most ordinary people, you are likely not familiar…
What do you never leave home without? Is it a purse? Your wallet? Keys? Yeah, I have all of those things too. But September through May, and dozens of other…
Anyone with Parkinson's disease or with a family member who has the disease knows that it can be heartbreaking at times. There are good days and bad days, but the sacrifices that have to…
C’mon! Get your friends moving and start walking. We’re taking steps to cure the world of a painful spine disease that can afflict its victims in early adulthood. May 7th…
Happy June!—a month dedicated to spreading awareness about myasthenia gravis (MG) and other neuromuscular diseases. MG affects nearly 20 people in every 100,000 around the world. One of those people…
For Deborah Cooper, getting diagnosed with myasthenia gravis was the easy part. Everything that spun out of that diagnosis was what really turned her life upside down. It started innocently…
For many patients with Pulmonary hypertension (PH), their path to diagnosis of this rare lung disease starts with the feelings of exhaustion and general fatigue. In fact, some patients may…
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