- Usher Syndrome
- Interviews
Paddy's interview
How did all start?
Born with a significant loss of hearing (particularly low freq.), from year 8 i've had hearing aids(teacher had to put me in front and speak louder), since about 12/14 i've had glasses (in the eighties one did not thought of Usher). When approaching late twenties, nightvision started to crumble. At the time (i had several other (mental) issues, wich, afterwards, calculated back to my diagnose Usher Syndrome), so i blamed it on degrading through age.
Do you already have a diagnosis? How long did it take you to get it?
Fastforward late November 2025, i've got a small stroke in my left eye, after several examinations, from doctor, via Optometrist, Eye specialist, i've got the diagnose Usher Type 2A on June 10.
This is the Dutch healthcare system, from (serious) start (of symptoms) it took about 6 months.
What has been the most useful thing for you so far?
Understanding from my village doctor and my eye specialist
What have been your biggest difficulties?
My age when diagnosed, i'm 56. I'll get over it, but i'd rather knew it when i was a teenager.
understanding from legal institutes(people working there) when i need help for equipment, a better house and whatnot.
How has your social and family environment reacted? Have your social or family relationships changed?
I also have a ERD(formerly Borderline) and ADHD.
I have a very strong family bond. As in, they and I will be there when needed.
Shocked with disbelief, Retinitis Pigmentosa / Usher is not one of the first things people think of to (probably) get in life. "Luckily" for me is that my sister has a friend with an eye disorder, who has experience in "moving around".
What things have you stopped doing?
My dayjob
What do you think about the future?
I'm full of energy an new doors are starting to open
So far, which years have been the best years in your life? What have you done during them?
Well, since i had a conscious view on the world, about six years until 14
Ben a child.
What would you like to do if you didn’t have your condition?
Start a business
If you had to describe your life in a sentence, what would it be?
Arena of survivalists and I am still standing.
Finally, what advice would you give to a person in a similar situation?
Drop the noise, look for signal
There is always a tomorrow
