Myths & Facts about Retinitis pigmentosa

Many statements about Retinitis pigmentosa (RP) sound frightening – but are not always accurate. In this article, we separate myths from facts: What is truly correct, what is outdated, and where is it worth taking a closer look?

RP progresses very individually. The course and speed differ depending on genetics and initial findings. Regular check-ups help to detect changes early and implement relevant everyday adjustments in a targeted manner.

Currently, RP is considered incurable. Research into gene therapies, cell replacement, and optogenetics is making progress, but therapies are not yet widely available. Care therefore aims at preserving function and independence.

Much can be actively managed: lighting, contrasts, orientation aids, digital tools, rehabilitation services, peer support – and, if appropriate, medically prescribed TES to slow down functional loss.

According to clinical data, TES (transcorneal electrical stimulation) can slow down the decline of the visual field; however, it does not cure RP. The goal is to preserve vision longer. Therapy decisions belong in specialized practice. Read more about the current therapy and study situation.

There are many genetic variants and different ages of onset, co-morbidities (e.g., Usher syndrome), and daily life requirements. Therefore, care is always individualized.

What affected individuals can specifically do

• Regular check-ups: Understand findings and document progression
• Adapt daily life: Control light/glare, increase contrasts, train orientation
• Utilize care: Rehabilitation, aids, self-help – and discuss therapy options like TES if suitable
• Activate network: Family, school/work, associations – involve support