Hi all!
I know probably a lot of you know about this, but I found some facts about CVI that I had to share, I feel a bit belittled because almost always when I tell people about this, they refuse to believe me. Even if it’s someone who knows me and my story very well.
The latest research shows that CVI might affect approx. 1 in every 30 schoolchildren ( at least one kid in each classroom).
People sometimes ask me why I’m so passionate about something that is so rare. Well, it’s not. At least one kid in each class has CVI. I sometimes think of this as how people looked at ADHD, Autism and Dyslexia a couple of decades ago. Now almost everybody has at least one of those things. Why is CVI only coming to the surface in the last 5 - 10 years? How many kids, teens and adults are we missing? How many other people are we misdiagnosing?
Approx. 70% of people with CP have CVI
Not surprising, since CVI occours due to brain damage - as does CP. I myself have both. CVI and hemiphlegic CP ( paralysis in one half of my body, in my case, left). Makes sense. Maybe if you have one problem due to brain damage, it is more likely to have multiple problems. A bunch of people with CVI and/or CP are prematurely born, like me. Maybe the reason that there are so many not diagnosed is that now we have better technology to help preemies thrive better than when I was born?
Up to 38% of people with Down Syndrome have CVI
Also, not surprising. Many people with Down’s syndrome have additional (dis)abilities, such as heart defects, If ever, they have had heart problems, it’s likely that during one of them might have occured some brain damage. Also if they have some genetic defects.
But, somewhat understandably, people don’t believe me when I tell them about this. I however, feel discouraged, hurt, and belittled when that happens. I wish people would at least try to put themselves in my shoes. I wish the battle with the system wasn’t so ongoing and exhausting. School system, health system, socially, etc. Etc. I wish I could always be involved in stuff on my own terms, not for people to make special accomodations for everything I touch. I want to be Dagbjört - not the girl with CVI, the blind girl or the girl with the weak leg. I have CVI but CVI doesn’t have me.
We CVI-ers have to fight every single moment for our existance, for our opinions, for the things we stand for. I have to admit, I often think to myself… ,,wouldn’t I be better off being blind??“ That is something straight forward what people will understand, and have little to no problem making the right accomodations.
* I often hate having something so invisible, but yet so obvious when people start to think.
*Im sad that I didn’t get a diagnosis sooner. I am hurt and angry at the doctor that refused *to diagnose me.
*It breaks me that my parents didn’t live to see me getting diagnosed officially.
*It’s hard for me to be the one standing up for not only myself but others too
BUT
im still glad I can give people hope and will continue my fight until ALL CVI’ers get what they need <3