Thank you for posting this. I'm a 65 year old male, I guess I've been relatively lucky as my choroideremia has been slow onset, and although I stopped driving about 14 years ago, it was only in 2017 that I told my ophthalmologist that I was starting to experience real difficulties.
Hi Paul - Please sign up to receive our e-newsletters at www.curechm.org as there are many mutation agnostic optogenetic and other therapies currently in development that may have potential for later stage CHM patients.
My daughter has choroideremia and now her son just got diagnosed with it also. My daughter's issue the Drs said might not progress. Now my grandson don't know. It's devastating
Hi Mary: We would be happy to connect you or your daughter to other parents of children with CHM, we have two chat groups that meet regularly. Please also be sure to sign up for our e-newsletter, we have regular educational webinars and conferences regarding potential therapies in development and many other resources on our website: www.curechm.org
There are currently no approved treatments for choroideremia, however, there are things you can do to try and keep your eyes healthy overall, please visit: www.curechm.org/for-patients-families/ for more information. We also encourage you to sign up for our e-newsletters which will provide information on upcoming virtual and in-person events focusing on research and patient/family education/networking: www.curechm.org/get-involved/#getnews
