Take Control: Managing Retinitis Pigmentosa

Mutations in specific genes change the normal function of retinal cells, causing gradual degeneration. Because RP is inherited, it often appears in several family members.

Knowing your genetic profile guides care and can open doors to targeted therapies. For example, an FDA-approved gene therapy exists for certain RP65 mutations.

This form affects only the eyes and has three main inheritance patterns.

• Autosomal dominant RP often appears later and tends to be milder.
• Autosomal recessive RP requires two copies of the gene and usually progresses faster.
• X-linked RP is passed through the mother and typically affects boys more severely.

Some genetic types involve other body systems along with vision loss.

• Usher Syndrome affects both hearing and vision, sometimes balance.
• Bardet-Biedl Syndrome can include extra fingers or toes, kidney issues, and learning difficulties in addition to RP.

Magnifiers, specialized lighting, and adaptive technology enhance remaining vision and support daily tasks.

Sunglasses and protective eyewear reduce glare and light sensitivity, easing discomfort and guarding retinal cells.

Cystoid macular edema and cataracts can appear with RP. Addressing fluid buildup or opting for cataract surgery can improve overall vision.

Gene therapy such as voretigene neparvovec targets certain mutations to slow vision loss. Researchers are also exploring retinal prostheses and other innovative solutions.