My Journey with Alport Syndrome

Well, I doubt anyone will read this or even care, but I’m writing it anyway.

I’m a single, straight 31‑year-old woman, currently waiting to hear back from Vocational Rehabilitation so I can finally get the medical tests I need for school accommodations—hearing tests, hearing aids, and low‑vision evaluations. I live with Alport Syndrome, a rare kidney disease that also affects my hearing and vision, which makes these accommodations essential.

Early struggles

Growing up, I never understood why my hearing and vision kept getting worse. By the time I started high school, I was already struggling to hear phone calls, and people called me “Butterfingers” because I was so clumsy and constantly dropping things. Sports were never my strong point, and having Alport Syndrome added layers of challenge to these experiences.

Language and communication challenges

I’ve tried learning American Sign Language (ASL) about three different times. Each time, I improve a little, but I’m still slow and awkward with it. English is my second language after Mexican Spanish, which makes it even more challenging.

Alport Syndrome and health challenges

I’ve survived both a stroke and a heart attack without medical help. My current neurologist told me that I need physical therapy to relearn how to walk and confirmed I had a stroke that didn’t show up on the MRI. My speech had started to slur about a year before that happened. Even with everything going on, he said my brain and nervous system are fine.

Vision obstacles

I can’t see in the dark or at night anymore. I confuse colors like dark brown and black. I see floaters every day. Moving from darkness to bright light hurts my eyes. Every year, my vision gets worse, and I need stronger prescription glasses. I bump into walls and doors and sometimes even fall out of bed by accident. I grew up loving books, but now reading hurts my eyes and head.

Heightened senses

My remaining senses—taste, smell, and touch—are getting sharper. I can identify objects by texture and size. I prefer walking barefoot at home because I can feel vibrations from people and animals moving, as well as differences in the floor.

Adaptation and coping strategies

Right now, I’m learning both ASL and Braille as part of coping with my hearing and vision challenges. Reading with my fingertips is easier than trying to rely on my eyes. I use closed captions, large print, zoom features, and loud volume for music, TV, and movies to help me navigate my environment. People tell me I talk too loudly and make too much noise, even though I can barely hear others. I can still speak clearly because I grew up speaking, but I have to raise my voice just to hear myself. I rely heavily on lip-reading and leaning in whenever someone talks to me.

Current life and gratitude

Right now, I live with my parents and their cats, relying on their support as I work toward finishing my bachelor’s degree and figuring out my next steps. After leaving an abusive ex‑boyfriend and dealing with a stalker, I’m grateful to have a safe space to heal and rebuild my life.