At the end of February, Hedy and Lowie gave a presentation to the ophthalmology department of the UMC Utrecht about ADOA(-plus). A fantastic opportunity to bring this rare condition to the attention of the people who can make a difference.
💙 There was room to talk about ADOA(-plus), the foundation and the personal experiences of Hedy and Lowie. Attention was also paid to recognizing ADOA through an anamnesis and research and they showed pieces from the documentary 'Wazig' by Nina Warink.
The healthcare professionals were impressed by our work as a patient organization. They indicated that they had never seen such a fanatic and professional organization before. They also said that they paid more attention to ADOA, because up until now, with the exception of one professional, no one had encountered an ADOA patient in their work.
👁️ Also interesting was a conversation about whether or not to see visually impaired patients regularly. Now, regular check-ups are often left to patients themselves. But if you are visually impaired, you sometimes don't know whether deterioration is due to ADOA or another condition. That's why it's important to have the health of your eyes checked regularly.
Hedy: “It was great to do and we would also like to do this in other ophthalmology departments in other UMCs. We hope that this information will help healthcare professionals to better recognize ADOA, to be able to refer earlier for genetic testing and therefore to be able to make a correct diagnosis faster.”
☝️ Are you interested in an information session for you and your colleagues? Or can you put us in touch with someone for whom this could be relevant? Let us know!
