Are you an adult who has been diagnosed with Dermatomyositis (DM) or probable DM? There is a new Phase II study currently recruiting that you may want to discuss with…
Happy Spring Patient Worthians! This week we have pieces from two rare women, one battling the rare disease pemphigus vulgaris, part of the pemphigus and pemphigoid family. The other is…
Diamond-Blackfan anemia (DBA) is a bone marrow failure disorder that is inherited, but very rare. It was named after Dr. Louis K. Diamond and Dr. Kenneth D. Blackfan, who were the…
Approximately one in 5,000 babies are born with a birth defect called gastroschisis. When a baby's intestines are protruding through a hole in the stomach wall resulting in the intestines being…
2017 Muscular Dystrophy Association Scientific Conference was a beacon of light! Researchers from academic medical centers, pharmaceutical companies, children’s’ medical centers, biotech, engineering, and veterinary medicine came together to share…
Let's talk blood donation. I recently spoke with a man from a small African country who suffers from hemophilia. He told me that when he was growing up, there was no…
There is something you should know about me that will put this subject into some better context. I love food. I live for food, I really do. And it's been a…
Loneliness and lack of social support can make a person feel overwhelmed, so I felt hopeful when I came across this cystic fibrosis (CF) website for kids. Children living with…
I read a pretty cool short and sweet article that you need to check out, written by a person who is living with narcolepsy. I’m so impressed by how well…
One of the hardest parts of being diagnosed with a strange condition you’ve never heard of—like Idiopathic Pulmonary Fibrosis (IPF)—is just getting your arms around what the hell it is…
To read our primer on Hemophilia, click here and to read our primer on von Willebrand click here. These next three bleeding disorders - grouped under the header "Platelet Disorders" -…
Fear of the unknown is a feeling we’ve all faced at some point. I liken it to standing at the edge of a cliff with nothing but a fathomless crevasse…
To walk in the shoes of others is sometimes what it takes to truly understand their journey. So when I came across the blog, Jason and Justin's Journey x2 - Don't Stop…
Devic's disease, also known as neuromyelitis optica (NMO), affects the spinal cord and the optic nerves. It is a relapsing-remitting disease, meaning its symptoms can appear and disappear. In NMO,…
This week is a small win for adrenoleukodystrophy (ALD) awareness and for these mini-bikers. Kevin Bean're and Tom Ford are mini-biking across the country, from Florida to California, to raise awareness…
Jack played high school volleyball and served with the junior fire department. He hopes to become an engineer. Donovan played saxophone, competed as a wrestler, performed theater, and reached a…
A rare, neurological disorder affected three women with the same career in Spokane, Washington over the last two years. All three were healthcare workers, so it would be easy to…
An Australian couple shares their story of finding out that their daughter Aviana, has spinal muscular atrophy (SMA). SMA is a rare genetic disease, which effects the nerves that control…
Some lucky people live their whole lives only taking medication intermittently, like pain killers when they have a headache or acute pain. Maybe they take an anti-inflammatory when they have…
To read our primer on Hemophilia, click here. Pop quiz, Patient Worthy-style: What is von Willebrand Disease? And no Googling! For those who were familiar, A+! And for the rest…
Imagine what it would be like to feel weak every time a strong emotion took hold. Of course, we all know that feeling when our knees feel weak or our…
It was an ordinary day for 8th grade student Landon Severson. He was just starting the new school year and went to marching band practice. However, his day changed when…
You brush your teeth, put on your pajamas and climb into bed. Someone attaches wires and electrodes to your head, chest and legs. You drift to sleep under the watchful…
Most people freeze when they hear the first two notes of John Williams’s theme from the movie Jaws. Lovers of classical music and band nerds will wait a few more…
Iva Rauh is a Pemphigus Vulgaris patient and advocate living in Maryland. Originally from Eastern Europe where the gene for this disease is prevalent, this is her plea to the…
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