This beautiful interview with Gabriëlle and Heleen can be found in Oog, the Association Magazine of the Eye Association, of June 2024.
In pictures – Heleen van Royen and ADOA
Text: Josephine Krikke
Photography: Andrea Resmini
This is the first episode of a new series in which OOG discusses eye disorders in art and culture. For this first time, the focus is on a book. Writer Heleen van Royen chose a person with ADOA in her latest novel 'Juice'. OOG wondered why this rare eye condition was chosen and the writer spoke with Gabriëlle den Hollander, who herself has ADOA.
'ADOA (Autosomal Dominant Optic Atrophy) is a very rare hereditary condition in which the fibers of the optic nerves shrink. This causes loss of vision. The damage to the optic nerve worsens slowly and cannot be repaired. The course of events can never be completely predicted. Some people see less sharply, less contrast or different colors. But tube vision can also occur. People with ADOA may also suffer from hearing loss, muscle cramps, loss of strength and balance disorders. This is called ADOA-plus. So far there is no treatment that stops or cures the ADOA disease.'
In recent months she has been in the media frequently: Heleen van Royen focuses on the rise of juice channels in her latest book. These are online accounts on which the administrators share rumors (juice) and stories about famous Dutch people. In the novel, artist manager Claire has her hands full with this.
She gives another role in the book to Chloe, who, according to Van Royen, has the sweetest character in the book. "I had thought that she must be someone who, literally and figuratively, would see increasingly worse," says the writer. In an initial online search, Van Royen came across ADOA, a very rare, hereditary condition that causes visual impairment and sometimes even blindness.
FIRST LESSON
And that is how she came across Gabriëlle den Hollander, who herself has ADOA. They met again for the interview and the OOG photo shoot. In the café they give each other a warm hug and have coffee, as if they have known each other for years.
But it's only been 1,5 years since they first had contact.
Den Hollander laughingly remembers how that went. 'When we were on a winter sports holiday last year, my phone rang. I was standing in the middle of the track and didn't know what I heard. Heleen van Royen in my ear!' But Van Royen was also surprised: 'How could she be on skis?
It was the first lesson I learned about ADOA.
I also use this information in the book: Chloe is also on the slopes. With an orange vest on, just like Gabrielle.'
OTHER COMPLAINTS
During the contact that followed, Den Hollander told all about living with her condition.
That she sees 20 percent at 'good moments' and 15 at others. That she stands in front of the classroom as a primary school teacher and also tries to keep up as much as possible on other fronts. That is not always easy, because she is limited in her energy. And because she suffers from other complaints, such as hearing loss. This is called ADOA-plus.
Den Hollander is co-founder and board member of the Cure ADOA Foundation, which brings patients together and is committed to research. Van Royen has made eager use of the information that she and the other members of her foundation provide. The writer also talked to an ophthalmologist and a Paralympic cyclist with an eye condition.
BEING BLIND
Van Royen: 'I learned that there are many different eye conditions. That “being blind” is a very flexible concept. And that Gabrielle's field of vision does not become smaller, but blurrier. But also how Gabrielle puts on makeup and chooses her clothes. It is a disease that worsens. For Gabrielle, this happened after her pregnancies - although there is no direct evidence that this is related to ADOA. I used all that information in my book.'
Now that she knows so much about ADOA, Heleen van Royen would also like to do something for the foundation. She regularly mentions the term in her posts on social media. This PR is very welcome for the foundation of which Den Hollander is a board member. "We have received a lot of responses," she says enthusiastically. 'And more awareness hopefully means that more fellow sufferers will join us. Not only that. We also want more doctors and scientists to see us. At the moment, the eye condition is still relatively unknown and more research could be done into it.' Van Royen was present at the Cure ADOA Foundation's peer support day. There she noticed how well the audio version of her book was listened to. 'Someone let me know that he thought a chapter was missing. No one else would have noticed!'
LEVEN
It is not the first condition that Van Royen uses in her work. She made her breakthrough with the book 'The Happy Housewife', based on her own experiences with postnatal depression.
She herself says about interweaving disorders in her books: 'Illnesses are part of life. And they often ensure that you focus on important matters. That is also what I address in my latest book. Chloe is not concerned with 'juice' at all, she is not in the noise of gossip. She focuses on the things that really matter. Just like Gabrielle.'
Juice by Heleen van Royen will be published in a new edition in June. There is also an audiobook, narrated by Ricky Koole. Recently Juice can also be listened to via Passend Lezen and is it is available as a large print book, JuiceXL!
