The Patient Perspective: Rochelle's Story


Rochelle and her boys

Rochelle and her boys

"I was diagnosed with retinitis pigmentosa (RP), a degenerative inherited eye disease, when I was six years old. RP is my ‘normal’ and I have lived a full and happy life.

"Things took a drastic twist recently, however, when both my young sons were diagnosed with RP.

"This news shattered my husband and I, as well as the rest of our family. With no other instances of RP in the family, it was not really something we had expected or prepared for!

"Whilst not exactly a blessing in disguise, this development has made me determined to focus my energy on being part of the solution.

"I want to help make a difference, not just for the future of my two precious little boys, but for patients and families everywhere who are faced with blindness.

"With my beloved sister Lisa, I have teamed up with a few other patients and families who have formed a group called SightFighter.

"We are the people with the most to gain so it makes sense for us to be involved in finding better treatment options and ultimately a cure. If we don’t contribute and show our support then how can we expect others to work tirelessly until a cure is found?

"SightFighter is not just about fundraising, it's also about sharing stories and raising the profile and impact of research into eye diseases.

"I dream of a community of patients and families who play an active role in moving the research forward.

"We've been interviewed by a few newspapers about becoming a SightFighter, and I’ve really appreciated being able to raise awareness of RP and highlight how hard the researchers are working to find a cure.

"In just six months last year we raised almost $6000 to help support research at SSI, and we plan to do much more this year.

"I invite you all to join us. There is no financial obligation - just a willingness to stay informed and to be a part of something in whatever capacity you can.

"Whoever you are, wherever you come from: if you are fighting for sight, we want you on our team."