Navigation “Vivre avec la FSHD - FSHD Society”

A Mother’s Perspective: World FSHD Day Stories

Publié le juin 17th, 20266/17/26

By Erin Folk In the spring of 2024, we began searching for answers about my daughter, Kinsley. At just 13 years old, she began losing muscle on the right side […]

Classé sous : Vivre avec la FSHD

Lire la suite

My FSHD Journey: From Fear to Hope, World FSHD Day Stories

Publié le juin 16th, 20266/16/26

By Taylor Quigg I was diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD) in August 2014 while I was eight weeks pregnant with my second daughter. At the time, my oldest daughter […]

Classé sous : Vivre avec la FSHD

Lire la suite

Living Beside FSHD: World FSHD Day Stories

Publié le juin 12th, 20266/12/26

By Kathy Chase Read more of Kathy’s writing on her Substack. People think they understand FSHD when they hear the words “muscular dystrophy.” I thought I did too. I imagined […]

Classé sous : Vivre avec la FSHD

Lire la suite

A Glimpse into Mental Health in FSHD: Early Insights from BetterLife

Publié le mai 22nd, 20265/22/26

by Kayleigh Worek, BetterLife FSHD Manager What BetterLife FSHD data is telling us this Mental Health Awareness Month Living with FSHD can impact more than just muscles. When asking people […]

Classé sous : Recherche sur la FSHD, Vivre avec la FSHD, Santé mentale

Tags : Anxiety, Depression, Soutien social

Lire la suite

What a New Study on FSHD and Mortality Means for Our Community

Publié le mai 18th, 20265/18/26

by Amanda Hill, Research & Care Programs Officer at the FSHD Society, and Ally Roets, Parent, Caregiver, CureFSHD for All Advocate and Parents’ Roundtable Leader   Many of us in […]

Classé sous : Recherche sur la FSHD, Santé et médecine, Vivre avec la FSHD

Tags : Recherche fondamentale, Breathing Problems, Early Onset or Infatile, Tests génétiques, Heart Health, Lung Health, Motivation de la recherche

Lire la suite