Did You Know February is Retinitis Pigmentosa Awareness Month?

This February is Retinitis Pigmentosa (RP) Awareness Month.  Retinitis pigmentosa is a genetic eye disease of the retina, and it is estimated that 1 in 4,000 people are affected by the condition.  Because RP is the degeneration of the retina, people living with the condition gradually lose their sight, which can take weeks, months, or years.  Can you imagine what it’s like for someone living with RP to know that one day their sight will completely disappear?

RP takes way an individual’s confidence and independence.  Even in their own home they may fear that they will injure themselves very badly by falling over or walking in to a wall.  Symptoms of RP include affected night vision and difficulty seeing peripheral vision.

Living with RP can affect your emotional wellbeing.  Currently, there is no treatment, and any developments are in the early stages.  ELVis Activities Coordinator, Bhavini Makwana has written a detailed blog entry about her RP diagnosis.  From feeling isolated to coming to terms with her sight loss as a new mother, it’s an inspiring story!  Read Bhavini’s blog entry here: http://bit.ly/2Bp6Ppn.

Just before the New Year, I attended an RP Patient Information Day in central London with Bhavini.  She stood in front of an audience to give a talk about how she has adapted to living with her condition and reassure others it’s not the ‘end of the world’ when you have sight loss.  My favourite part of her talk was when she said, “You don’t need to have sight to have vision, so go out and find your vision and be the best you can!” I remember it very clearly because it’s a really encouraging quote.

At ELVis, several of the members have RP.  One member living in Tower Hamlets describes how he has adjusted to his night blindness.  He says, “I am able to travel in the evening because I use my white cane and I utilise sighted assistance on public transport.  It is helpful and reassuring to have someone there to guide me.” Furthermore, he reveals how technology has helped him to ‘see’.  “I use apps on my phone to tell me the colour of my clothes, and I have a talking thermostat to tell me the temperature of the food when I cook.”

As I mentioned earlier, receiving an RP diagnose can be a stressful time so having a support network is very important.  ELVis members living with RP are able to meet each other at our social group outings and events to share stories, receive peer support and gain confidence to remain independent.  Find out about our upcoming events on our website!

Photo showing a RP simulation of night blindness.

Written by Ray Calamaan