Your Stories, News, Ideas Wanted.
If you’re a Kerataconus patient and have decent writing chops, I’d love to feature your post on this site. I want real-life stories from real people, technology news from physicians, and any doctors who want to post ideas, but not advertisements.
Please make contact with me via email at scott [at.] buzzmaven.com. Please do not call about this site, I’m pretty busy.
Ron Piscitello
December 26, 2011 at 5:09 pm
Hi Scott,
Like you, I was diagnosed with Unilateral Keratoconus in my left eye. Right eye has astigmatism and I wear a daily Toric lens in it. I was diagnosed at age 36 in 1999. My optometrist could not figure out why my astigmatism was getting worse every 2 months. He finally got it right after two years. I have been seeing an Optometrist at University Hospital in Cleveland who specializes in Keratoconus fittings. She has been tremendous in helping me over the years. I have gone through most of the lenses available. You name them, I’ve tried them! I am now wearing piggybacking system. Dyno Intra-Limbal Boston XO RGP over an daily Accuvue TruEye soft lens. Still having comfort and double vision issues, but this is the best I can hope for now at 20-40 vision. My Opthamologist has suggested that I will be a DALK candidate when the time comes, and he said it will come. I have dealt with many emotions that come with this condition. Fear, Anger, Depression, Anxiety and now Acceptance. It has been a long journey. My best to you and all of us with KC.
Scott
December 26, 2011 at 5:11 pm
You’ve tried semi-scleral?
Amanda Kirk
January 5, 2013 at 7:52 am
Hello from South Africa!
Hey there – WOW! I wish I’d found your blog when I as was searching the web for information on my rapidly deteriorating condition and sudden run up to my corneal graft (it’s almost 12 weeks since my DALK)
My keratoconus was diagnosed when I was 36, but deterioration was marginal until 2 months after my 40th birthday – then all hell broke loose (and it’s not over yet)! I‘d love to add my story to yours, so please let me know if you’d be interested in me adding content to your site.
Either way – it was great to read your story and take care of that eye!
Scott
January 5, 2013 at 10:56 pm
good luck with your graft and recovery. Be patient and diligent.
I’m assembling some authors to contribute and will add your name. But this site is a hobby endeavour – so things move a bit slowly.
Kirsten Holt Beitler
January 18, 2013 at 12:29 pm
Hey Scott. Great site! So glad more people are talking about KC. If you’re interested, I have some blog posts about my short and crazy journey with this disease. Here’s the link, and let me know if you want to use any of my info. http://www.kirstenbeitler.com/my-brush-with-life/category/All%20About%20The%20Eyes
annie
April 23, 2013 at 1:58 am
hi scott…I too had a cornea transplant in my left eye due to keratoconus with dr Holland on june 7 2010. the transplant looks amazing but since then my eye pressure has spiked as high at 66. dr Holland then sent me to a wonderful glaucoma dr (dr greff at cei). come to find out, the steroid drop I take (lotemax) has caused my glaucoma. so since October 26, 2012, I have had 3 glaucoma surgeries. I go to cei pretty much every week since then. now my pressure is holding steady between 6-8. dr Holland and dr greff made me see a retina specialist because I have wrinkles on my retina because my pressure is too low but was told by dr miller (retina dr) that the wrinkles should work themselves out. now the steroid drop has given me a cataract that dr Holland will remove in june. I still have to have a cornea transplant with my right eye but until they figure out what I going on with my eye, I will wait. I do love all the drs I have seen at cei and I love the staff…..they are the best.
Scott
April 23, 2013 at 9:44 am
Wow… that’s a lot. I hope things quieten down and smooth out for you.