Happy New Years, Patient Worthians!
New year, new you… new treatment news? This week, we have an article about a molecule that could change the way we treat cystic fibrosis. We also have a thymus-transplant success story about a baby girl with DiGeorge syndrome who made it home for Christmas, in addition to an uplifting campaign started by a boy with LEOPARD syndrome, who takes fundraising for a cure into his own hands. Finally, a family who seeks justice over the death of a man with HHT, who died in prison.
Sit back and enjoy this week’s Editor’s Choice.
This New Discovery Could Improve Your Cystic Fibrosis Treatment
New research on molecules called quorum-sensing inhibitors may have big implications for people who battle CF.
Read all about it here.
Baby Girl from Michigan Receives Rare Treatment for Complete DiGeorge Syndrome
A baby spent most of her first year of life in the hospital. Finally, she gets to go home.
Read more about the story here.
6-Year-Old Boy with LEOPARD Syndrome Launches Christmas Campaign to Raise Awareness
When a young boy is diagnosed with a rare genetic disease, he takes initiative and uses the internet to help find a cure.
Read about his story here.
Family of 27-year-old Inmate with Osler-Weber-Rendu Disease Sues Correctional Facility in Florida for Wrongful Death
The family of an inmate who died in a correctional facility believes that his death could have been prevented had the facility taken his rare condition seriously.
Read the story here.
