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Batten Disease

All articles tagged with #batten disease

health1 year ago

"Health Highlights: This Week's Top Stories You Need to Know"

Fox News Digital highlights top health stories of the week, including new Alzheimer's subgroups for personalized treatments, a mother raising awareness for Batten disease, concerns about ancient viruses resurfacing due to climate change, AI targeting a drug for inflammatory bowel disease, and debunking myths about prostate conditions. Additionally, a colon cancer survivor shares her cautionary tale, and experts provide warnings and tips regarding the potential risk of overdosing on semaglutide.

via Fox News|
#ai#alzheimers#arctic-zombie-viruses
health2 years ago

"Mother's Hope: Seeking a Cure for 8-Year-Old Son's Rare, Fatal Disease"

Emily Blackburn's 8-year-old son, Grayson Naff, was diagnosed with the rare, genetic, fatal disorder Batten disease, which will lead to vision loss, cognitive decline, and ultimately death. The family is navigating the challenges of managing Naff's symptoms and raising funds for his costly care, while hoping for a cure to be developed in his lifetime. Batten disease currently has no cure, but research and medical efforts are ongoing to find treatments tailored to its different subtypes.

via Yahoo News|
#batten-disease#childhood-illness#family-support
health2 years ago

From Miracle to Devastation: The Heartbreaking Discovery After IVF

Jennifer and Philip Palermo, parents from Seattle, shared their devastating journey after their IVF miracle baby, Amelia, was diagnosed with a rare and fatal condition called CLN1, also known as Batten disease. Amelia's health rapidly declined, leaving her completely blind, suffering from childhood dementia, and with a short life expectancy. The family advocates for more funding and awareness for Batten disease, hoping for potential treatments in the future.

via Newsweek|
#advocacy#batten-disease#genetic-disorder
health2 years ago

Heartbreak and Hope: A Mother's Journey with Her Sons' Childhood Dementia

A family in Washington has been devastated after their two sons, aged six and two, were diagnosed with Batten disease, a rare genetic condition that leads to childhood dementia. The boys will experience seizures, loss of speech, motor skills, and eyesight, ultimately resulting in limited time. The parents and their four-year-old daughter carry a gene that raises the risk. The family is scheduled for surgery to slow down the disease's progression and will start treatments to improve their quality of life. Despite the crushing diagnosis, the boys are currently doing well, and the family is making the most of their time together.

via Daily Mail|
#batten-disease#childhood-dementia#devastating-diagnosis