On the day of December 5th ,2023, I had no idea my life would completely change. Today, 10 months later, after a misdiagnosis, multiple hospital visits, countless testing, many specialists…
Sickle Cell, an inherited disease, involves crescent shaped red blood cells that are the “vehicles” containing hemoglobin, a protein responsible for carrying oxygen throughout the body. For almost a year…
Nothing about meningitis is fair. In mere moments it can devastate lives and destroy families. It can take away dreams and shatter plans. These factors make marking my 20th year…
If you live in the Northern Hemisphere, Fall has quickly passed, and Winter is upon us. The beginning of Fall is one of favorite times of the year with the…
The team at Patient Worthy is excited to announce the official launch of our collaboration with our companion site WHATNEXT.com, a cancer-focused online community and media platform with the goal…
Roche has been developing an experimental drug for Parkinson’s disease for over ten years. According to BioPharma Dive, the latest statements from the company are that the drug, prasinezumab, failed…
Researchers from the National Institutes of Health and the Human Hereditary and Health in Africa (H3Africa) Kidney Research Network reported that people from West Africa with one genetic risk variant…
Living with a chronic condition is never easy, but living with two can feel like an insurmountable challenge. My journey with epilepsy and endometriosis has been a test of resilience,…
According to the data that was presented at the 2024 ACR Convergence, a considerable number of patients are hospitalized when it could have been avoided. As reported in Healio News,…
Adversity comes in all shapes and sizes and how we deal with it differs from person to person. I have faced great adversity at different times in my life, some…
Approximately one and one half million people are affected by ulcerative colitis (UC) worldwide. It is an inflammatory bowel disorder with, as of yet, no known cause. There are, however,…
"You have cervical dystonia", said my beloved family doctor of 20 years. He was almost exuberant, relieved to have finally uncovered the mystery of my severe neck pain, head tremors,…
For Part 1 of Jeremie's story, click here. I just want to share my rare disease story today! I used to be a theater actor and a performer on stage.…
I was diagnosed in 2021. It all started when I was hospitalized for about 3 weeks due to high blood glucose - Hyperglycemia. During my stay in the hospital, my…
The FDA’s recent approval of AbbVie’s new combination therapy provides patients with longer-lasting control of movements. As described recently in Biopharmadive, Parkinson’s disease is characterized by uncontrolled muscle movements or…
Madrigal today released their first report of results following FDA approval of Rezdiffra for the treatment of NASH in April. Their results are on track according to company forecasts but…
Athletes experiencing multiple brain injuries now have more to worry about than ever. Excessive traumas to the brain common in sports like boxing and football, are now being linked to…
Imagine that your loved one is diagnosed with a rare disease. The first thing you do is to go to the internet to understand what you can about this disease…
When I developed a neurological movement disorder called dystonia back in 2001, one of the first things I was told is that there is no cure. This terrified me. No…
Part 3 - Our Post-Transplant Journey (the first year) Continued from Part 2 From the nurses and doctors to the therapists and social workers and everybody else involved in Becky’s…
For decades, children battling hereditary angioedema (HAE) faced a challenging reality: preventing life-threatening angioedema attacks meant enduring regular intravenous infusions or subcutaneous injections. This barrier to preventive care has now…
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