Join the USH Trust registry. While genetic testing can seem scary, it allows your doctors to pinpoint the impacted gene(s) that are causing your child’s Usher syndrome. Medical research is continually growing and evolving, however current research is hindered due to limited awareness of those diagnosed with Usher. By registering, you become a part of the solution to understanding Usher syndrome and developing treatments and cures. Visit usher-registry.org to sign up.
Find a community. Because Usher syndrome is so rare, it may feel difficult to find a community of support that understands your challenges and experiences. The USH Blue Book connects individuals and families affected by Usher syndrome via email. Support exists and it helps to know you’re not alone. Whether you participate in the online forum or via email only, this community is a tremendous resource when you have questions, as well as positive anecdotes that can provide encouragement.
Take care of yourself. The diagnosis may still be fresh in your mind. You may be overwhelmed by details or you may be propelled to do everything you can by trying to research all the latest information, doctors, clinics, etc. Totally understandable… but make sure you make self-care a priority. Taking time for yourself to recharge and renew is not only essential for your emotional and physical well-being, but it allows you to be a better support system for your child and family.