Facing the future with RP will undoubtedly appear difficult at times. You will have good days and bad days; times when you are optimistic about your own prospects and the prospects of a scientific breakthrough that will lead to treatment, and times when you get frustrated and angry and it feels as though there are numerous barriers to success in life.
Future Treatment Prospects
RP Fighting Blindness, amongst others, stimulates and funds medical research looking to understand exactly how genetic flaws cause RP, and to find treatments or cures. In several countries around the world, clinical trials are taking place of potential therapies, and the amazing advances made over the last 5 years in particular offer the most promising prospects for treatment that we have had.
There are positive, genuine news stories being circulated about patients taking part in clinical trials, though it is important to note that (particularly via the internet) there is also a considerable problem with misinformation and even treatment scams, so care needs to be taken. Genuine prospects for future treatment include the following:
The direct replacement of faulty genes in the cells of the retina with a good copy. In trials, this has been done by using a virus to carry the genes to the cells. The treatment is at ‘proof of principle’ stage, and has been safety tested on a small number of genes. Perfection of the techniques and more trials are needed to confirm safety and effectiveness before the development can take place of a generally available treatment
Sometimes controversial, this involves the use of progenitor cells (stem cells) potentially from various sources, which are encouraged to develop into working retinal cells. Techniques are being developed to inject these into the retina directly, and also to create cell matrices externally with a view to transplantation. Stem cell therapy is regarded by many as the best long-term prospect for treatment but this is still many years from fruition. There are concerns about uncontrolled cell growth and rejection by the body’s immune system which have to be overcome, as well as the technical hurdles.
Some research groups are working in developing drug treatments which will slow down or halt the degeneration and death of the retinal cells. Some success has been seen in animal models of RP.
These are designed to replace the retinal cells that are no longer working with an electronic artificial device. There are various technologies being tested in several countries and these are at different stages of development and regulatory approval. Generally, the consensus is that they currently restore a small amount of useful visual function, more a visual aid than real vision, but that the technology will advance further. They have been successfully trialled in human patients and in some cases are available to buy on a private basis, albeit extremely expensive.
Other researchers are investigating the use of dietary supplements, nutrients and growth factors, other implants, and ways of making other cells in the eye responsive to light.
Your Future with RP
The other future consideration will be your own lifestyle, and your own response to RP. It is best to make as much contact as you can with other people with RP, perhaps more advanced than yours, and learn from them.
Societal attitudes towards sight loss are improving, technology makes work and leisure more accessible, more and more support is available, and patients are increasingly empowered to take control of their own lives. This pathway is a good example of information that was not readily available to someone with RP in the past.
RP Fighting Blindness makes a range of information and support services available to you as someone with RP and a good starting point is to visit the charity’s website or to contact the RP Helpline on 0845 123 2354.