Though I share stories about my son Tyler in blogs all the time, I haven’t highlighted Fragile X syndrome (FXS) since 2014. As July is Fragile X awareness month I thought I would once again shine a light on the most common inherited cause of intellectual disabilities and autism. Since Tyler’s diagnosis of FXS when he was two, my wife Jammie and I have become very involved in helping spread the word about Fragile X. We have been blessed to meet so many wonderful families on the same journey we are on and share our hopes and dreams as well as comfort one another in our discouragements and struggles. I have also been blessed though my travels with Mandt to meet many wonderful caregivers of individuals who live with FXS.
Fragile x can range from mild to profound impairments and is caused by a mutation to a single gene on the X chromosome. Behavior characteristics include things like ADD, ADHD, autism and autistic behaviors. Behaviors also often include hand-biting, flapping, sensory disorders and an increased risk for aggression. Though FXS is often more pronounced in males, females with FXS have similar issues with about one-third having significant intellectual disabilities. Though the before mentioned issues can be challenging there are also many wonderful characteristics associated with individuals who have FXS. They are very social and friendly, have excellent imitations skills, a strong long term memory, love to help others,are extremely empathetic and have an amazing sense of humor.
Like most disability groups, the Fragile X community continues to do research to help find ways to support individuals with FXS and hopefully one day find a cure. Most important is getting people informed about FXS and aware. While individuals with FXS have challenges, with the right supports and interventions, they have shown to be productive members of their families, schools, workplaces and communities. As officially recognized by congress since 2000, July 22nd is officially Fragile X Awareness day. Please take some time to go to the National Fragile X Foundation’s website and learn more. www.fragilex.org
Tim Geels – Senior Vice President of Organizational Development