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Early-onset FSHD causes weakness in the face before age 5 and/or weakness in the shoulders and arms before age 10. Only about 5-10% of people diagnosed with FSHD are diagnosed with early-onset FSHD.
People with early-onset FSHD usually progress faster than those whose symptoms start later in life. Some people with early-onset FSHD will need a mobility aid by their 20’s or 30’s, and a few might need a wheelchair as young as age 10. Children with early-onset FSHD also have a higher chance of vision and hearing problems, but these can be treated if found early.
Join our Early-onset FSHD chapter!Finding out your child has been diagnosed with FSHD is tough for any parent, but we want you to know that children with early-onset FSHD can still do well in school and have successful careers. Planning ahead, finding the right resources, and having support from family and community can make a big difference. Our Early Onset chapter , led by parents of children with FSHD, is a great place to find support and learn helpful information.
Understanding your child’s condition and being prepared for the changes that will come will help them in the long run. This means learning how symptoms may develop, getting important tests and therapies, and being ready to handle any physical challenges in the future.
Since most cases of FSHD (90-95%) start later in life, early-onset FSHD hasn’t been studied as much. This makes it harder for drug companies to design clinical trials for children with early-onset FSHD because there isn’t enough data. The good news is that both early-onset and classical FSHD come from the same genetic cause, which means that treatments made for classical FSHD should also help those with early-onset.
We know how much parents want their children to have access to new treatments, even if they are still being tested. The fastest and safest way to make this happen is by supporting clinical trials for adults first. This helps get treatments approved by the FDA more quickly. The FSHD Society is working hard to make sure children with early-onset FSHD can get these approved treatments as soon as possible.
If you want to learn more, our recent FSHD University webinar with Dr. Tina Duong explains what scientists know about FSHD and how the early-onset community can prepare for future clinical trials.
This section includes summaries and links to stories from parents and caregivers, online resources and databases, the latest research on early-onset FSHD, and answers to common questions (Early-onset FAQ graphic). Click to browse different publications detailing early-onset and pediatric FSHD.
