Make sure you stick to your drop schedule. It is awful, but it is the only way to improve and heal.
Meeting another AK sufferer at my hospital.
The Facebook support group helped me to feel I am not alone
mijn vriuendinnen, die altijd voor me klaar stonden
Asking a lot of questions when I see the doctor - half of them know as little as me and it forces them to be better
Staying in hospital for the first 15 days of treatment
Prescription sunglasses.
Gavin Herbert Eye institute at UCI specifically Dr. Farid and Dr.Mosaid. And Dr. Ghosheh for referral.
Research everything about your disease because depending on the rarity of whatever it is you just never know what may work for you or not. Listening to the doctor is very important but also researching and educating yourself about what you will be going t
Losartan for my Alport syndrome
Grepolis
Local support in at treatment abroad Malta and Mr Mercieca consultant
Excellent consultants