Living With Retinitis Pigmentosa
Retinitis pigmentosa (RP) can affect every area of your life. While there is still no cure for this progressive genetic eye disease, there are many resources available to help you navigate life with the condition, meet challenges, make adaptations, and thrive. Here are some ways to take a proactive approach to your RP diagnosis and care.
Take a proactive approach
Taking an active role in managing both your disease and your life is paramount. The first thing to know is that, although RP is rare, you are not alone in your diagnosis, nor are you forgotten or ignored in the medical, research, or social service communities.
Participate in a Retinitis Pigmentosa Study!
To date, there is no approved treatment for Retinitis Pigmentosa. Help scientists change that. If you’re close to Durham, NC. USA, and have been diagnosed with Retinitis Pigmentosa, this study may be of your interest!
- Receive study information and learn more about RP
- Undergo health assessments and study procedures
- Receive study drug (ADX-2191) at no cost to them
- Receive compensation per study visit (up to 10 visits)
Undergo genetic testing
Knowledge is power. Identifying the genetic cause of your particular case of RP can clarify the diagnosis and help direct you and your doctor to the most appropriate interventions. It can also identify potential risks to other body systems and organs. Genetic counselors can guide you and your family through the testing process, making sense of the results, and discussing the genetic risks to–and social impacts on–other family members. Genetic testing is also frequently required prior to participation in gene-related clinical trials.
Join a support group
Regardless of disease or condition, millions of patients have reported the benefits of participating in peer support groups. Sharing knowledge, giving and receiving encouragement, and simply feeling understood go a long way in helping people living with chronic health conditions maintain a positive outlook, find new and creative solutions, and boost their mental and physical health, improving their quality of life.
There are many online support groups for people with RP, including several Facebook groups such The RP Family Group (which has members from around the world) and Retinitis Pigmentosa, as well as groups run through various universities and hospitals around the U.S., such as UCSF Health.
Share your data
Sharing your health data and personal experience with a patient registry and data bank can go a long way toward advancing research that helps us understand the causes, risk factors, and progression of diseases, which in turn can expedite the development of treatments, preventions, cures, and improvements in resources and overall care.
The My Retina Tracker Registry, provided through the nonprofit Fighting Blindness, is one of the largest patient registries for inherited retinal diseases (IRDs) such as RP. When you share your information on My Retina Tracker, it is de-identified before it is shared with scientists in the research and clinical communities. The registry can also help connect you with clinical trials and other studies. There is no charge to you for using this service.
Take advantage of low-vision resources
Though RP is a rare disease, there is a wide array of resources available to help people with low vision and blindness. These range from low-vision counselors who can help you find assistive devices, recommend adjustments for your home and work space, and connect you with rehabilitation services and vocational retraining.
Some online organizational resources include:
- https://www.asharedvision.com (for genetic testing)
Guide dog services in the U.S. can be found through:
Participate in clinical trials and related studies
Last, but certainly not least, you can get involved in one or more clinical trials. There are many benefits to participating in clinical trials, including:
- The opportunity to try a new treatment before it is commercially available
- Playing a more active role in your own healthcare
- Receiving tests and medical care before and during the trial period
- Helping to find preventions, treatments, and cures for existing and future patients
- Receiving information about support groups and other resources
To find out if you’re eligible for the ADX-2191 Retinitis Pigmentosa clinical trial at Duke Eye Center in Durham, North Carolina, go to https://responsumhealth.com/clinical-trials/retinitis-pigmentosa-study/