For the Newly Diagnosed
Discovering that you or a family member has FXTAS is the beginning of a journey. So let’s start at the very beginning…
When you first hear the diagnosis of FXTAS, you, like most others, may feel upset and overwhelmed. You may not even know what questions to ask. This is a common, quite normal reaction. If you would like to talk with one of our knowledgeable support staff, even right now as you are browsing this website, feel free to call or e-mail us at The National Fragile X Foundation (NFXF).
We have developed a comprehensive handbook, "Fragile X-associated Disorders (FXD): A Handbook for Families, Health Care Providers, Counselors, and Educators", which is available to you at no cost. Simply contact us via phone or email and we will promptly send you a copy. You may also download it in Adobe Acrobat PDF format by clicking here.
On this website, please use the menu system on the left side of your screen. We suggest first reading the "How to Navigate" section, and then starting with the “What Is FXTAS?” section. Don't try to absorb it all at once. Over the next few days and weeks, you will begin to understand what the diagnosis might mean for you, your spouse, your children, and the rest of your family.
Informing Family Members
Since FXTAS is a genetic condition, this diagnosis has an impact on both immediate and extended family members. If Fragile X is new to your family, informing family members, both immediate and extended, can be a complex and daunting process. We have a special section on this website to assist you in the process. It includes family support information and suggestions, as well as a sample letter, to help with informing and explaining to family members about Fragile X and its inheritance. Click here to access this.
We're Here to Help
Gradually you may find that not too many people, including medical professionals, have even heard of FXTAS, or if they have, know much about it. We are available to send you reading materials for your physicians, therapists, and others. These materials include medical journal articles as well as materials developed for non-medically trained readers, family members, and caregivers.
Also, The National Fragile X Foundation and the Centers for Disease Control (CDC) have collaborated in establishing the Fragile X Clinical and Research Consortium that includes over 20 Fragile X evaluation and treatment clinics in the United States and into Canada. View the clinic information to determine which clinic is most accessible to you and offers the services most appropriate for you and your family.
Please contact us at 1-800-688-8765 for more information or to receive a comprehensive free packet of information about Fragile X-associated Disorders.
Contributed by: Liane Abrams, MS, CGC
