On August 12, the Social Security Administration (SSA) announced an update to its compassionate allowances program, which aims to expedite the processing of disability benefit applications for individuals with severe and rare conditions, including neonatal Marfan syndrome, a severe, complex form of Marfan syndrome. Neonatal Marfan syndrome is evident in early infancy and shows rapid progression during childhood. It can cause heart defects, skeletal abnormalities, and ocular problems, as well as pose life-threatening complications.
“[Neonatal Marfan syndrome] is all consuming,” said Veronica Rydzewski, whose 8-year-old daughter, Kierra, has the condition. “It’s not just one part of the body or one organ to worry about. It is everything in the body that has connective tissue. It affects mobility, vision, cardiac function, lung function, pain, and more.”
The compassionate allowances program is designed to quickly identify and approve disability benefits for individuals with specifically identified conditions, shortening the time it takes for applicants to receive benefits.
“The SSA’s decision to include neonatal Marfan syndrome in its compassionate allowances program is a significant development for families in our community dealing with this challenging diagnosis,” said Josephine Grima, PhD, Chief Science Officer for the Foundation. “A quicker approval process for disability benefits can mean easier access to critical healthcare and support services. It can also help alleviate some of the financial burden and stress to the families and caregivers.”
“Taking our daughter to numerous doctor appointments she requires regularly is time-consuming,” said Veronica. “It affects us financially – we go out of state for surgery, so our daughter is surrounded by experts in her condition, and the time we take off from work is extensive. Our mental health – it’s draining – and, sometimes, downright depressing. It’s great that the families who are affected by this condition will be able to be processed faster.”
For families affected by neonatal Marfan syndrome, inclusion in the program provides hope and assistance as they navigate the challenges of care and seek resources to support well-being.
For more information, view the Social Security Administration announcement or visit the webpage.
Find information about neonatal Marfan syndrome on the Foundation website and download our fact sheet.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.