Sara’s Story
Growing up as a supporter

Meet Sara

Hi, I’m Sara, and this is my Dad Stephan. My dad was diagnosed with retinitis pigmentosa (RP) when I was seven.

Books have always been an important part of my life and I love spending hours getting lost in other people’s stories or worlds or perusing book shops for the next book to add to my shelves. With that being said, it shouldn’t surprise you that I got my Master’s degree in English Literature. Nowadays, I work for Retina Suisse, a patient organisation in Switzerland, where I co-author information brochures for people living with low vision, their families, and supporters.

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Becoming a supporter

My childhood

I remember my childhood before my Dad’s diagnosis fondly. As a typical Swiss family, we spent a lot of the warmer days hiking and discovering the beautiful landscape Switzerland has to offer. When the weather kept us indoors, we spent our days reading or playing with Lego®.

Looking back, there were clear signs my Dad’s vision was getting worse. We learned to clean up before my dad got home from work so he wouldn’t step on our toys. My older brothers were tasked with watching out for Dad when we went out on hikes. Once, when they failed to pay attention, Dad walked right into a tree and cut open his eyebrow. After this, they learned to stay focused. There were many occasions when we greeted him on the street, he didn’t realise we were talking to him and ignored us. However, it wasn’t until my dad was diagnosed shortly before his 40th birthday that I realised how bad his vision really was.

A picture of Jamie smiling holding a dog

Maintaining independence

A picture of Evella smiling sat on a sofa with a dog

Seeking support

While the diagnosis and all the unanswered questions about his (and our) future felt scary and devastating, it was also a relief for my parents, to be able to reach out to patient organisations like Retina Suisse and ask for help.

What is more, Retina Suisse opened up many opportunities and fun adventures for us. My Dad started to use a white cane, which stopped numerous questions and confused looks from our neighbours. He also attended a ten-day course to learn braille, which he later taught me. My Dad went back to school, to become a social worker, and ultimately became the director of Retina Suisse.

Shortly after my 13th birthday, my dad got the first of his two guide dogs, named Dallas. His guide dogs ended up bringing so much joy and laughter into our lives, and gave my Dad the confidence to leave the house on his own again. It’s amazing how independent and happy my dad is now compared to when he was first diagnosed.

Not only does he love his job, helping newly diagnosed patients, their families and supporters, but he regularly travels both nationally and internationally with very little assistance. He used to need me to act as a guide, but now I spend a lot more time assisting him with administrative tasks and computer problems while my Mom helps him pick out new clothes and supports him with other chores.

Supporting my dad and myself

People often ask me how I balance my roles as a daughter, supporter, assistant, and employee.

Because of my dad’s RP, my Mom had to do a lot of the parenting. While he loved playing card games or listening to audio books with us, my Dad was reliant on my help from a very young age, as he was often blinded by daylight and couldn’t see where he was going. This changed our dynamic and even now, having a healthy relationship requires both of us to be constantly aware of our roles and set boundaries whenever necessary.

While supporting my Dad is far from difficult, my mom and I like to go on a short trip on our own about once a year. This gives us the time to explore places my Dad would find hard to navigate, do things he cannot do and spend more time together, whilst taking a break from the mental load that comes from supporting a person living with RP.

Photo of Jamie smiling wearing sunglasses at a cafe

My advice for others supporting their loved ones

Growing up with a father who has a degenerative retinal disease has taught me several important lessons.

Firstly, going blind is not the end of anything. You can still be happy, successful, independent, and so much more. We are lucky to live in a country like Switzerland where having a disability is not stigmatised. There are a number of low vision and technological aids as well as great public transport that allow my dad to continue to work.

Secondly, it is important for supporters of a person with a degenerative disease to allow themselves to grieve. Every time my dad noticed another decline in his vision, the grieving cycle would start again and this would affect all of us. We often experience this grief, and it reminds us to enjoy every single day.

Thirdly, talking to other supporters and family members can help you cope with many of the challenges you face, and when I need to forget about everything, getting lost in a good book works wonders!

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