Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…
I read a rather confusing article about Esbriet, the first FDA-approved treatment for idiopathic pulmonary fibrosis (IPF), and I’d sincerely appreciate your help to make sense of it all. Let me…
I have that sinking feeling… And it’s really starting to bother me. I’ve never said this openly before but here goes: My gut tells me there’s a strange link between…
So there’s this Greek guy who happens to be suffering with frequent bouts of pain and fatigue as a result of living with sickle cell anemia (SCA). And when he…
An amyloid is an abnormal protein produced by a person's bone marrow. It builds up in the body's organs and, while rare, is very serious. The disease is called amyloidosis,…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Ever since Andrew Wakefield and his cohorts published an article in The Lancet that warned of the measles, mumps, and rubella vaccine being linked to autism and bowel obstructions, the…
Hereditary angioedema (HAE) has long been misunderstood. Many patients go for years without a proper diagnosis because the medical community knows very little about this rare condition. Part of my job…
Being married to the love of your life would mean that you know everything there is to know about one another. Physically, emotionally, and mentally. Right? Well, Gene is married…
I want you to think about spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Then, think about the word: DIGNITY. Dignity…
The drug, Ceriliponase alfa from BioMarin, helped in a condition that has led inexorably to disability and death: Batten Disease – specifically CLN2. Families of kids facing this prognosis are…
Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…
A special session on CGD will be presented at the 2017 IDF National conference. CGD is a primary immunodeficieny disease and is characterized by skin infections, both fungal and bacterial,…
If you or your loved one is living with idiopathic pulmonary fibrosis (IPF), scientists have proven that there is a link between exercise and longevity—especially for people who have IPF.…
A rare disease that is not so rare: Hormonal causes of high blood pressure have been considered rare but “can be as high as 50% among children and 30% among…
I was at a gala hosted by my local library about two weeks ago. It was a posh affair, as library galas go, and everyone was all dressed up. The…
Remember when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…
Siblings! We all have our opinions. Not everyone has that close unified bond with his or her brothers and/or sisters, but one thing is certain: If the connection is there,…
When you’re a parent, the childhood milestones are many. Flash, blink, bam—and then the rite of passage to adulthood starts. Yeah, I know… I flew through those first 18 years…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…
What would you do if you had a disease so rare that you went weeks or months without a diagnosis? What would you do if after your diagnosis, you told…
I’m barking mad! You know the old saying, “Let sleeping dogs lie,” right? Well, I couldn’t help but think of the 200,000 Americans living and struggling with narcolepsy because they’re…
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