Patient Ambassador - Telling My Story
My story is pretty simple, but complex too, but one of great success and hope to share with others who are on the edge of AMD - dry or wet.
In January of 2006, both of my parents had died after spending roughly a decade with wet AMD in each eye. But fortunately, I was the answer to my mother's prayers for a drug that would stop wet-AMD or perhaps even rescue some back to at least "driving vision." And I became a subject in stage IIIb of Lucentis in February 2006.
Doctors felt it was the right choice
By June 30, 2006, I had had six injections of Lucentis in my right eye; and that eye had come from about 20/200--400 of legal blindness to 20/35. The reason June 30, 2006 is important is that that's when the FDA approved Lucentis for ongoing treatment of those whose doctors felt it was the treatment of choice. Now, it is 16 years later; and I'm seeing in both eyes at about 20/25 in my left eye and about 20/30-35 in my right eye. I still get Lucentis injections in my right eye about every 8 weeks--or this time 11 weeks.
Urging my siblings to get checked
Further, I was able to put a sibling brother of mine onto getting checked by a retina specialist in Texas. I live in the Nashville, TN area. Although he couldn't get Lucentis that hadn't been approved before June 30, 2006, his retina specialist used the off-label treatment of Avastin (which was being used in the UK and elsewhere). That off-label drug proved to be about equally effective with my FDA-approved drug, and my brother at age 78 is still seeing well. Our sister has dry-AMD and gets regular retinal specialist checks.
A patient-information ambassadors
Over the years, I had a few injections with Eyelea; and it too was effective. After three years as a patient-information ambassador for the producers of Lucentis, I had told my fuller story across much of the United States and to the Parenteral Drug Association Meeting at the Broadmoor in Colorado Springs, Co. I had spoken to Lucentis sales reps at their annual meeting twice in California. And I find myself pleased with this bulletin board that lets people tell their own stories; because, they all tend to differ somewhat.
Thankful for the study
But the good news is that I was told by a reputable ophthalmologist in January 2006 that I was going blind and there was nothing that could be done about it. Cold laser might slow it; but, fortunately, the laser machine broke before I could get my first zap. So I qualified to meet the criteria as a subject for the IIIb study of Lucentis. I became a poster boy in published pieces and enjoy sharing my story. Thanks for the invite.
How many eye specialists have you gotten opinions from?