A Resilient Spirit: The Life of a Patient and Advocate
Jean’s life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical
Jean’s life story is one of extraordinary resilience, a testament to the strength of the human spirit in the face of rare and challenging medical
The Riken Center team, headed by Dr. Takaomi Saido and using mice with Alzheimer’s, discovered that dopamine may lessen the brain’s physical symptoms and improve
Meet Liam, a 12-year-old patient at Shriners Children’s St. Louis, born with myelomeningocele, a severe form of spina bifida. This condition affects sensation in his
Fredericksburg, Virginia resident Johnny Boatman is a former national guardsman who had been in excellent physical condition all his life. That was until 2022 when
It has been almost a decade since the European medical community welcomed news of an innovation for primary biliary cholangitis (PBC). Therefore, the EC’s recent
Crystal first started noticing abscesses on her skin around age 11, and was officially diagnosed with Hidradenitis Suppurativa (HS) at age 13. HS is a
According to an announcement from invisionmag.com, the nonprofit organization Prevent Blindness has announced the fifth annual Thyroid Eye Disease Awareness Week, which is being recognized
Written by Heather Shorten, Founder, Pompe Alliance On July 15th, 2015, I was diagnosed with Pompe disease after about 3 years of searching for a
Mohammed was born with spina bifida, a condition in which part of the spine doesn’t develop properly, exposing sections of the spinal cord and nerves.
According to a story from Business Wire, the biopharmaceutical company Astria Therapeutics, Inc., recently announced that its experimental therapy navenibart has earned the US Food
Written by Bill Clark Part 1 – Our Journey from Fatty Liver to Liver Failure Becky’s fight is our fight. That became my “rallying cry”
Written by Lauren Williams On August 4, 2023, I contributed an article to Patient Worthy about how I transformed my mindset from “Why me?” to
An article in Globe Newswire described dermatomyositis (DM) as a rare disease that involves a unique skin rash and muscle weakness. Currently doctors are relying
Written by Vanessa O’Connell Hello, my name is Vanessa, and I am living with late onset Pompe disease, also known as glycogen storage disease type
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