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Rare Disorder Corneal Dystrophies

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I am a 22 year bilateral, invasive  breast cancer survivor, who has now developed a second rare disorder, corneal dystrophies, which includes an anterior corneal dystrophy ( epithelial basement membrane dystrophy in both eyes, and a posterior corneal dystrophy. The first rare disorder that  I was diagnosed with was  Vasculitis from an adverse reaction to Reclast  (which I was taking for severe osteoporosis from over a year of chemo). I will take Imuran as long as it will work.I also developed three heart arrhythmias and have a pacemaker and take heart medications. (Yes, I have a history of heart attacks.)You name it, I have had it.I am a retired teacher with limited funds and this needed surgery is way out of my financial capability. I have Medicare and Health Insurance but its not all covered.  I was referred to Dr, Arun Gulani, who is world- renowned, by my neuro-ophthalmologist, because of what has turned out to be a complex case. I will now have to see a retinal specialist next week,  Cataract surgery  will also be performed and a new technique used to spare trauma to already troubled corneas. This surgery could potentially save me from corneal transplants and save my sight. My portion of the surgery would have been $25,000 but Dr. Gulani gives discounts to teachers and Veterans.  He told me that he does not mislead in expectations nor in the cost of his procedures, but he feels confident that this surgery will  spare me from corneal transplants. My rheumatologist also highly recommended Dr. Gulani.  I have battled this eye condition for 5 years, not knowing that it was a serious, rare condition. This is just as alarming to me as my cancer was because it affects my ability to see. One reason I retired from teaching after 33 years was because of my vision impairment. Unfortunately, Medicare does not always cover new medical techniques.  I hate putting  my medical circumstances online, but we do what we have to do. I need help.  The surgery is needed as soon as possible. Any donation is greatly appreciated. I know that people do not easily part with their money and now during Covid 19, it is even more difficult. I appreciate even a dollar.
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    Organizer

    Kitty Sullivan
    Organizer
    Macclenny, FL

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