Newly Diagnosed with RP

As a family member newly diagnosed with RP, here are a few tips with helping your family member or friend with this new diagnosis.

1. It is a diagnosis and not a death sentence. Let your family member or friend know that they should not let the condition define them.  For example, my college roommate as blind and he graduated with his Bachelor’s degree and attended Law school. The eye condition should not limit you.
2. Offer help when asked.
3. Encourage often
4. Identify resources to help with the new diagnosis
5. Patients with RP do not see well at night and some may feel uncomfortable traveling during this time. These patients may or may not enjoy going for an evening walk or other activities at night. This should be a topic that you ask them personally. If your family member sees poorly at night, then you may want to consider inviting them to your home earlier and to allow them to return home before sunset.
6. Movie watching. Be prepared to bring a flashlight to help your family member navigate better through the poorly lit movie theater.
7. People with RP still have the same wants and needs as you do. Treat them with respect and not differently than others.

If you have other Pearls, please send them to: info@juliettefoundation.org