Sometimes we laugh about it, sometimes we cry about it, sometimes we share news and medical articles about it, sometimes we avoid talking about it altogether, but it’s always there. We’re identical twin sisters who have grown up with RP. We’re now 34 years-old, both married to amazing guys, and have sweet little daughters. Although we look a lot alike on the outside and share the same challenges of vision loss, we often have different perspectives on the disease and each deal with it in our own way. We wanted to create a blog mainly for other people with RP, as we find it helps to feel connected when facing the day-to-day challenges of living with RP.
We also hope that it can give family and friends of people with RP, Ushers, and other similar diseases a glimpse of what it’s like to live with these types of challenges. And frankly, this is therapeutic for us, so even if no one (besides our mom) reads it, we’re gonna write it anyways!
A little background on us individually: Jenelle (the eldest by 4 minutes!) has a BA in Communication and Sociology from Seattle Pacific University, spent a number of years working in the non-profit sector, and most recently owned and managed a clothing boutique.
She is now the “24-hour-personal assistant” to her two children, Cora Jean (5 years old) and Benjamin (one year old).
Joy studied Sociology, English and Spanish at North Central College, has an MA in Education, and spent several years teaching 7th grade Language Arts. She now spends her days teaching, among other activities, her 8-year-old, Lucy, and 4-yaer-old, Elliana.
Though we live 2000 miles apart (Jenelle in WA and Joy in IL), we talk almost daily and hope that this blog will help bridge the gap in miles.