A recent publication from BMC Pediatrics outlines a case study of Kawasaki disease in a group of infants from Italy. Because Kawasaki disease is a rare disease (with only an…
As originally reported in the Washington Post: many parents of children with rare diseases are familiar with the agony of mystery surrounding their children’s medical conditions. The frustration of searching…
Allostasis Allostasis is a concept coined by Joseph Eyer and Peter Sterling, colleagues at the University of Pennsylvania. In 1981 they published a paper which contested previous theories on the…
One particular problem for those with rare diseases is that the manifestation of the disease is often particular to the patient, each with their own quirks and tendencies. This makes…
Happy Thursday everyone! We're seeing more and more leaves falling over here, and the weather is genuinely beinning to cool down. Today, we're lighting a two part patient story covering…
Bob Hussey Bob Hussey is a 62-year-old mechanical engineer who, thanks to his own experience as an ulcerative colitis patient, has created a new invention that could help a wide…
In western culture, many people tend to frame body and mind as two distinct parts of us. There are mental health disorders, then there are physical ailments. To treat disease,…
By: Maria Palombini, IEEE-Standards Association For more than a decade there has been much propaganda on educating and encouraging patients to manage their healthcare. This was a direct shift in response…
ABC's Bachelor franchise isn't exactly known for not dramatizing the medical experience of contestants (if this article were in video format, we'd insert a montage here of all of the times…
Stem cell therapy is one of those new health trends that, in many cases, make doctors and scientists cringe. The lack of evidence and research makes critics call it not…
According to a story from Newswise, a recent phase 2 clinical trial testing a combination treatment for the rare cancer rhabdomyosarcoma has displayed encouraging results. The combination consists of the…
Click here for Part 1 of Aunika's Story Despite the success of the transplant, baby Aunika wasn’t out of the woods yet. She continued to have issues with breathing and…
As originally reported in Scimex from a press release by The MITO Foundation, the main five patient advocacy groups on mitochondrial diseases have pledged to work together to afford 1…
Every ultrasound Maggie had showed that her daughter, Aunika, was perfectly fine. The family was left in shock when she was born struggling to breathe. Baby Aunika was rushed to…
According to a story from Science Daily, the University of California San Francisco's Benioff Children's Hospitals have successfully treated an infant with juvenile myelomonocytic leukemia. The drug used for treatment…
According to a story from Medscape, a recent study is highlighting the fact that many thyroid cancer survivors are still worried about cancer-related problems years after the conclusion of treatment.…
According to a story from Newswise, Holly Becker was only 24 years old when she was first diagnosed with non-Hodgkin lymphoma. However, her life was saved with a stem cell…
Recently, a well-paid celebrity, being afraid that her daughter wouldn't be accepted by the college of her choice, paid a "fixer" to help the girl by cheating on the results…
According to a story from the Warwick Beacon, the first ever primary immunodeficiency (PI) awareness and fundraising walk in Rhode Island's history was held recently at Warwick City Park. The…
Genes themselves are a relatively new discovery, found only about a century ago. Gene therapy, a medical procedure that alters genes to address disease, is in its first 30 years.…
As reported in 17 Magazine, at 17, Billie Eilish has rapidly become a huge celebrity with her life catapulted into the public eye. Part of being famous in 2019 means…
Patient Worthy has written extensively about Dr. David Fajgenbaum, who has made it his life's mission to find a cure for Castleman Disease. Dr. Fajgenbaum is not only diagnosed with…
Thirty-five percent of all Americans and almost 25% of the entire world population may be unknowingly suffering from a "silent killer." Nonalcoholic fatty liver disease or NAFLD is occurs…
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Why would someone compare genetic editing to weapons of mass destruction? Perhaps one answer can be found in the automobile. The family automobile was certainly not designed as a weapon…
According to a story from Angioedema News, a recent study has found that the drug icatibant (marketed as Firazyr) can safely treat older patients with hereditary angioedema, a rare condition…
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