The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…
Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…
Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…
When people think of the monumental achievements of science, most think of landing a man on the moon and bringing him home again. That is an impressive feat. However, science…
There are few things more frightening and horrifying for a new parent than being told that their child has a lifelong medical disorder. Perhaps the only words that could make…
With the rise of medical advancements, you would think that fewer people would end up with short bowel syndrome (SBS). Yet, that is not the case. The reason for developing SBS…
When your lungs aren’t getting enough oxygen, it’s a real problem. A big problem, especially, when a person is living with idiopathic pulmonary fibrosis (IPF). But that’s not the only…
Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…
According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients. Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research.…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
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…
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…
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…
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…
There’s one person I learned about today who has an admirable life mantra. The young man is D’Marco Jackson, and he lived with aplastic anemia (AA), but he succumbed to…
No matter how mentally flexible or strong you are, we all have a breaking point. Unfortunately, many of us tend to push ourselves as far as possible until we reach…
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…
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