De acuerdo, Dr.House: Tenemos padres por primera vez que afirman su recién nacido es "irritable, inquieto, vómitos explosivos, y se niega a comer." Aunque también decir que el niño tiene…
¿Quién sabía que el colonialismo podría ser una de las principales causas de las enfermedades raras ?! Al menos, ese es el caso de muchos quebequenses. La tirosinemia, que afecta…
Congratulations! You're about to have a bundle of joy! You have names picked out, and you've been preparing for the past nine months to welcome this new little family member.…
La vida con una grave enfermedad afecta a más de la salud física; salud mental a menudo sufre, también. Que es una de las razones Anna Barlow tomó nota cuando…
Low-fat, low-tyrosine recipes don’t mean you have to go light on the flavor. Because children who have to adhere to a tyrosinemia diet cannot eat foods that include meat, poultry,…
Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…
Congrats Patient Worthians! You made it to Friday! This week we have some interesting Myasthenia Gravis pain remedies. Additionally, we have a pretty sweet Acromegaly poster designed by one of our…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
Life just got a little easier for parents of young kids with Tyrosinemia Type I (HT-1) Raising a child with Tyrosinemia requires constant, attention to diet, a special formula, and…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
It’s a scenario that turns veins into ice: your certified healthy infant’s belly swells to the size of a basketball and doctors say he has less than 48-hours to live.…
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…
Did you guys know Rare Disease Week is next week? Come participate with us! This week however, we wanted to address some rare diseases of our own: Lyme and POTS. Though POTS…
Let’s say for a moment that you’re a new parent. First things first: Congratulations, we’re so happy for you! Now, let’s also say that hidden among all the tests and…
Shortly after Joshua Holdner was born, he entered into a fight for his life. He had a hard time nursing, and when he did eat, it was quickly followed with…
So let me get this out of the way upfront: I’m no scientist—and no, I don’t play one on television. I struggled with science in school, which is why I’m…
Every now and then, you come across important information that really screams for your attention and you’ve just gotta share it. Here’s the scoop! If your loved one has been…
I feel so inspired by Canadian doctors and their healthcare system! I recently read an interesting post from Julie; she and her husband live in Canada and are the proud…
When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
There are actually three types of the disease called Tyrosinemia, but in this post, we're only going to focus on Type I. Tyrosinemia, type 1 (TYR 1) is a genetic disorder…
News services recently picked up a fascinating story that I think everyone should read! Little 8-year-old Kayleigh Petersen, from East Brunswick, New Jersey, stunned a packed crowd of loyal hockey…
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.
