About RPF-

RP Friends India

The news that you have Retinitis Pigmentosa (RP), a eye disorder leading to progressive loss of vision, can be mentally devastating. The mind becomes the hub of a storm with question “ What Next ?” , “Why Me?”. This is the time when once needs information and support and that is what RP Friends does.

A lot of information is available on the internet related to medical, social, emotional aspects as well as research and in general the directions where the RP world is heading to.

Information is the key factor determining whether RP controls your life or You control your Life in spite of having RP. People worldwide interact on a daily basis using email, special groups, exchanging and sharing information. But the same interaction and coordination is missing among RPs in India, simply because issues concerning Quality of Life are forgotten over matters of Life and Death.

The main aim of the RP Friends India,a group of RP patients,their families and friends, is to bring RPs in India together and provide  proper information to them thus helping them live a better and fuller life.

Other Aims and Goals

v     Bring RPs in India together and help them to share information

v     Counseling for RPs, their  family and friends

v     Distribution of latest information on research and developments in area of Retinal Degeneration

If you are interested in becoming part of this group please contact us at details mentioned below.

Counsellers:-    Dr. Vatsal Parikh

                        M.S.,D.O.M.S., F.C.P.S.
                                    Fellow Sankara Nethralaya (Madras)

Honarary Consultant and Vitreo-Retinal Surgeon at P.J.Hinduja National Hospital.

                        Dr. S Natarajan                                                                                                                                  M.B.B.S., D.O., F.R.V.S. , M.A.B.M.S., M.O.R.C.E., F.A.B.M.S.                                                    Medical Director – Aditya Jyoti Eye Hospital

                        Visiting Vitreo-Retinal Consultant at P.J.Hinduja National Hospital.

                        Managing Trustee – Aditya Jyoti Research Foundation

Dr. Ashish Phadke

M.D.(AYU), M.I.I.M.(GOLD MEDAL), M.I.O.A., D.OPT,

Ayurved Vachaspati, Ayurveda and Eye Consultant

Understanding RETINITIS PIGMENTOSA ( RP )

Accepting Retinitis Pigmentosa

You may have been told recently or you have known for some years that you have Retinitis Pigmentosa (RP). This diagnosis could well help to explain the months or years of not being able to see properly in the dark, of stumbling into things and of falling over objects which you did not see. You will possibly have been told that, at present, there is no cure for RP and that you have to face the prospect of slowly deteriorating sight. Slow loss of sight is a difficult disability to live with, especially as you may not receive the immediate sympathy and understanding usually shown to the totally blind.

The first and hardest step towards living positively with a disability is accepting it. If you have RP this means knowing the limitation of your vision and learning to use intelligently the visual clues you still receive. Those with RP can panic or they can adjust to their changed circumstances and move on down the road of life and this is the right way to go.

Accepting that you have RP will not be easy. You may go through periods of despair and of feeling resentful, bewildered or even angry. All these reactions are understandable, especially as the very nature of this disorder makes adjustment difficult but the way in which you deal with it determines the type of life you and your family will share from day to day. If you try to ignore it, you will suffer constant reminders that it is there. If you write yourself off as totally incapable, you will be missing out on many of life’s enriching experiences. If you can tackle steadily and thoughtfully each new problem as it arises, using clues that come through your other senses as well, you will find that you can live a more positive and enjoyable life.

Advice for Family and Friends

Don’t be over protective, but observe what he or she can do without help. Listen to any suggestions such as how to arrange the house, keeping the floor clear of objects, not moving the furniture around too often, shutting cupboard doors and never leaving doors half open. When out, try to give warning of unexpected hazards such as steps (and indicate whether they are up or down and how many). If you are the one with RP, explain how much you can do without assistance and where and when help would be appreciated. The family that is always tense and over protective can be morale destroying. When you are helping your family to understand your disability, use incidents that are particularly relevant. Living with a disability can be hard for the other members of the family too and the one who has it can do much towards making life happier by explaining to those around how they can best be helpful.

Remember that RP is a progressive disorder and that, consequently, the needs of a person with RP will change from time to time. It is often difficult for members of the family to understand that something which was helpful five years ago, may be of little use today.

Some people may feel too embarrassed to tell others about their sight problem and try to conceal the difficulties they are experiencing. If you can overcome these sorts of feelings and be open about having RP, then your life will become much easier and less stressful.

Medical Aspects of Retinitis Pigmentosa

Retinitis Pigmentosa is the name given to a group of disorders of the Retina, all of which result in a progressive reduction in vision.

To understand how RP affects patients, it’s helpful to know how the retina works. The retina lies at the back of the eye and acts like the film in a camera, receiving and processing everything a person sees. The retina is a delicate layer of cells. The cells that initially respond to light are the rods and cones.

Rod cells are responsible for side vision and also operate in poor light or at night. There are about 120 million rods in each eye and they are more numerous towards the outer edge of the retina. The cone cells are used in color vision and in close precisionwork, such as reading. They are more concentrated in the center of the retina. 

The most classic symptom of RP is difficulty seeing at night or in poor illumination. With loss of rod function there is a narrowing of the field of vision, and as the degeneration progresses, patients feel as though they are looking into a tunnel. This is why RP is sometimes called “tunnel vision”. Other symptoms include difficulty adapting to changes in lighting and differentiating between certain objects. For example, children in the classroom may have problems seeing writing on the blackboard, and an overhead projector may be difficult to read. Other patients may have problems negotiating concrete or carpeted stairs that lack edge markings.

The loss of cone cells leads to affects central vision or one’s fine, detail reading vision. This is usually late in the course of the disease. In some cases the cones are affected first leading to loss of central vision in early stages.

Symptoms Of Retinitis Pigmentosa

Ø      Difficulties in seeing at dusk or in poor light conditions

Ø      Gradual reduction in the field of vision, loss of the outer edges, resulting in a tendency to trip over things

Ø      in seeing in bright sun light

Ø      Difficulties in adapting to changes in Light

Ø      Twinkling in front of the Eyes

Causes  of Retinitis Pigmentosa

Retinitis Pigmentosa is a genetic disorder. It is programmed into your cells, not caused by injury, infection or any other external agent. Genetic defects (mutations) send faulty messages to the retinal cells which leads to their progressive degeneration, which in turn, leads to vision loss. 80% of the times Retinitis Pigmentosa is inherited, it is strongly recommended that if someone in your family is diagnosed with a retinal degenerative disease that all members of the family contact a retinal specialist. In the rest 20% of the cases you may be the first person to have the genetic defect causing RP.

Treatment for Retinitis Pigmentosa

Though currently there is no treatment for RP, there are several areas of research that offer tremendous promise for halting the disease or restoring vision loss:

Ø      Retinal Cell Transplantation

Ø      Gene Therapy

Ø      Pharmaceutical Therapy

Ø      Nutritional Therapy

Ø      Development of Artificial Retina

Ø      Development of Retinal Implants

Please get in touch with RP Friends India if you need any information related to RP. We will be glad to help.

info@rpfriendsindia.org