Welcome to JOURNEY THRU ICE SYNDROME!

ICE?    I have what?    It’s rare?   IridoCorneal Endothelial syndrome.
From the moment of first diagnosis through the ups and downs of living with this eye disease for years….I always wondered who else in the world has been diagnosed with this “rare incurable” corneal disease and secondary glaucoma and how can I connect with them. 

  

Over the past 10 years, as I have felt the need to ‘browse the web’ for ICE information, I would occasionally run across a database or a forum of users with ICE questions and answers….but much of it seemed outdated, not very user friendly and often times lacked an emotional connection.      It recently came to me…. Create a blog!    I’ve always wanted to start writing a blog for my little side business…but I just hadn’t gotten around to learning how to do it.    What a better way to try to connect with the ICE community and still learn some new technology!     So here I am! 

It is my hope and prayer that this blog can bring us together….that it can provide a vehicle of understanding, support, and encouragement  for the patient, family member or friend.   With ICE, some days are painful and hard (with few understanding what you’re going through)   ….  and then (hopefully) there may be weeks, months or years when you hardly think about it (except for all those eye drops and recurring appointments with your specialist).      

We are more than ICE.  At times, it’s easy to get consumed & frustrated with this disease…..but we need to share, support and keep our spirits uplifted.   We have a life to live! 

Please join me as we continue through this lifetime Journey thru ICE.   Please subscribe to my blog or visit often and comment when you feel like it.   I look forward to hearing from you!