ChinoOtoko's interview
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How did all start?
I was told it’s caused by severe stress or intense loss. I was visiting my grandmother in hospital, she passed away in front of me and my eyes watered slightly and began itching. It kept itching all day and the next morning I woke up completely blind.
Do you already have a diagnosis? How long did it take you to get it?
It took a few months to get a diagnosis since nobody knew what I had. But I am diagnosed now after seeing a minimum of 6 retinal specialist who agree.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have been given steroid drops and oral steroids. All which work but cause severe organ damage and I can no longer take prednisone as it causes me to have this damage plus short term dementia. So stress free is the best method with healthy diet and exercise
What has been the most useful thing for you so far?
Diet and maintaining a stress free environment with warmer temperatures
What have been your biggest difficulties?
Cold weather,stress and finance
How has your social and family environment reacted? Have your social or family relationships changed?
It’s harsh and rough, lost most of what I thought was permanent
What things have you stopped doing?
Smoking cigarettes, eating sugars
What do you think about the future?
Seeing normal again
So far, which years have been the best years in your life? What have you done during them?
Best years were before this issue
What would you like to do if you didn’t have your condition?
Baseball, paint and play with my son again
If you had to describe your life in a sentence, what would it be?
Bullshit, I had a better chance of being struck by lightning twice and winning the power ball than being born with vkh.
Finally, what advice would you give to a person in a similar situation?
Special diet, exercise, smoke marijuana it helps....I have a prescription. Stress free is key, not any stress.
