Hayley is one of SRSB’s clients and is also an active supporter of our charity. She was first diagnosed with Retinitis Pigmentosa, also known as RP when she was 22, and when this happened she went into denial for the first few years.
Hayley felt that she had a normal life; married with three young children, worked as a a staff nurse, drove a car, went out socially and had her independence, which she took for granted. Then her night vision became worse and she was told she couldn’t drive, which is when she felt her life stopped being normal.
Hayley explains, “As the day vision became worse I had to leave my job. By this time I had my children to focus on to serve as a distraction from these events. I have been luckier than some with RP in that my vision deteriorated fairly slowly over this time. However, in the last 3 years this has escalated and emotionally I hit a low point. I realised that life was very different for me now even simple things were difficult. I felt my independence and confidence slipping away. My youngest child was getting ready to start school and I wanted to do something with my time but felt helpless and unsure how to move forward.”
She first became involved with SRSB quite by accident after her sister came across us because of her work, and following a phone call a visit was arranged to our Mappin Street Centre. “That first visit I remember clearly like a weight had lightened, I’d found somewhere that understood my frustrations and just as important could help me. And as if fate had intervened at the right time it happened to be the same time that the meetings for the support group for RP had started up.
“Of course I attended a meeting and met even more people that would help me. I was amazed to see so many others in the same position as me and some much worse. Through these meetings I have been able to get up to date with the latest research and studies and meet people who are going through the same experiences and feelings as I have. This is a valuable thing to someone who is feeling isolated from everything they knew and a little scared of the changes and challenges they face.”
Hayley then decided that she would like to help SRSB in return for the help that they had given her and had always wanted to do a Skydive, so after some discussion with the fundraising team, she took part in the charity’s first Sykdive in 2012! After signing up, Hayley explains, “Well that was it, no going back, I had to raise at least £400 to do the jump and with lots of help from my brilliant family and friends, I managed to smash that target and raised £4,000 for SRSB! And the jump – well that was amazing. I’ve never felt so many different emotions in one day. Completing the jump gave me a sense of achievement and I felt my confidence building a little.”
Here at SRSB, we find Hayley such an inspiration, she is dealing with her diagnosis by keeping positive and moving forward, but it has obviously been a challenge, as she describes, “As I stand at the minute I have good and bad days dealing with my RP. I have recently gone through the process of being registered severely sight impaired and undergone some cane training preparing for my future. You can imagine the effects physically and emotionally being told you are losing your eyesight. I want to stay positive about my RP and the SRSB will help me do that and maintain my independence. Through continuing to attend the RP support meetings I can keep in touch with any future developments and be inspired by other people. I know if I need anything can pick up the phone or visit the centre. The impact that SRSB has is life saving for me and many others like me, not just those with RP but other eye conditions too.”