I inherited Axenfeld-Rieger Syndrome (ARS) from my mother’s side. Before I was born, she had genetic counseling and was told that if she had a baby, they would most likely have Axenfeld-Rieger Syndrome.
At the time she didn’t even know there were different types, neither of us knew there were different types until I was in high school and found out from the ARS support group on Facebook.
Out of all of my diagnoses, the ARS has affected my life significantly more. It has caused my congenital cataracts and glaucoma and has taken away my vision. I also have very few, weird shaped and small teeth. I plan to get dental implants in the future and while they are expensive, I know I can achieve that goal and do it on my own.
One of the conditions along with the ARS that my parents knew I was born with was Spina Bifida Myelomeningocele, along with hydrocephalus. The type of spina bifida I have is known to be devastating.
My parents were told that I wouldn’t be able to walk, they would have to catheterize me long-term and I would have to be saran wrapped while my back was healing because while I was in-utero my back was open. There was no evidence or knowledge that my back could close on its own but by some miracle it did.
Even though they said I’d have to be catheterized my whole life, I was able to stop after second grade. The hydrocephalus was very mild and never required a shunt. I also have ADHD which was never diagnosed until this year.
My other mental health issues didn’t arise until 2016 after a traumatic hospital experience. I have attempted to attend college twice, but the chronic pain and mental health issues have kept me from finishing.
In 2016, I also began with symptoms of classical Ehlers-Danlos Syndrome but a diagnosis did not come until 2019.
I am now 24. I am blind due to my Axenfeld- Rieger syndrome and glaucoma. I have many mental health issues and chronic health problems.
I attempted and failed college twice but I still have goals and ambitions. I want to be an actress/voice-over artist. I am a blind gamer and I want to be an accessibility consulting entrepreneur and create my own consulting company on accessibility. I would also like to create a company that makes accessible games for those with all types of disabilities. I am a person who wants to own my own house and I want to own my own car, but don’t worry, I won’t be driving it. Even though I am disabled and have mental health and physical chronic health issues, I am still a person with goals and ambitions. It may take me a very long time but I will achieve them. I was born beating the odds and I will continue to do so!
