Dorien from Goes draws attention to eye disease
December 2018
An interview with Dorien Blankenburgh, one of the founders of Cure ADOA Foundation in the Zeeland newspaper PZC.
GOES - Those who have a rare disease rarely encounter fellow sufferers. Dorien Blankenburgh from Goes' mouth fell wide open when she bumped into someone at a flea market who also has ADOA. A chance meeting with major consequences.
ADOA - also called DOA - stands for Autosomal Dominant Optic Atrophy. Quite a mouthful. In short, it means that the optic nerve slowly dies, resulting in severe visual impairment. And that cannot be remedied by wearing glasses. Dorien (40) can still remember that she ended up in the eye hospital when she was eight, where it was determined that she had ninety percent vision. A month later it had already dropped to sixty percent.
Fortunately, it didn't continue to go that fast. Dorien can now still see fifty percent. That has been fairly stable for years. “And still enough to drive a car,” she says. "Although I prefer not to drive when it is dark or raining." The resident of Goes has the mild variant of ADOA. One of her three children - daughter Lise - also has the hereditary disease and can only see thirty and forty percent with her eyes. Dorien's grandfather also suffered from the progressive condition, just like her mother. She no longer sees anything with one eye and twenty percent with the other. Yet she still leads a fairly independent life. That gives Dorien hope for the future, because she knows that difficult moments are still to come. "One day I will have to get rid of my car."
Midwife
Despite the fact that she saw her dream of becoming a midwife go up in smoke due to the disease, Dorien is able to put things into perspective. "It doesn't hurt and it won't kill you," she says matter-of-factly. But she is aware that others have it harder. She knows a fellow sufferer with much more limited vision, who lost his job and wife. "And in fact also his child, because he will probably not get custody due to the illness. Then you can safely say that it has ruined your life.”
On King's Day 2017, Dorien (who recently became an English teacher at Scalda) was selling things on the flea market in Goes when a woman bought something from her and could barely distinguish the coins in her hand. She said she had ADOA. It was a special moment that led to lasting contact. The two Zeeland women have set up a Facebook page together about their condition. This has now even led to a national foundation, of which Dorien is a board member. Raising money for research is one of the most important goals, because there is not yet a cure for the disease. "A medicine to stop the decline would be great," says Dorien.
Patients
The foundation also wants to promote contact between fellow sufferers and raise awareness of the condition. Particularly in the medical world, because even many ophthalmologists are hardly familiar with the disease, according to Dorien. When she and her daughter once visited a young ophthalmologist at the Goese hospital who turned out to know ADOA, it made her very happy. "But there is still a world to be won."
The Cure ADOA Foundation is now looking for donors. Ideally, there should be a hundred before the new year starts, because then a subsidy may already be applied for in 2020. "All the money goes to research," emphasizes Dorien, who is in close contact with a renowned ophthalmologist from Cambridge. "We all pay for other things, such as flyers and the website, out of our own pocket."
The original article can be found here: www.pzc.nl/bevelanden/dorien-uit-goes-vragent-aandacht-voor-oogvezel-het-kan-je-leven-ruineren~a515802d/
