This Is NOT A Keratoconus Blog!

Picture: anime girl with flower.Hey there, everyone! ^_^/

I thought I should take a moment to explain to all of my new and old followers to this blog, that this is not a support blog for those suffering with the eye disease named Keratoconus. For the third time, I had someone approach me with this idea about the purpose of my blog.

I do understand the confusion for this mistake, as several of my posts have been re-blogged on a cool support site/blog for those suffering with the disease: KeratoconusGB. This particular group is also available on Twitter and Facebook. I’m not sure why they’ve decided to re-blog my posts on the subject, I am flattered, however I’m not in any partnership with that site or groups.

I’m a blogger who happens to suffer with Keratoconus and my blog is about my quest to find happiness in my life in spite of being diagnosed with the disease. And it’s not a blog mainly about my disease either, as there are many other hurdles that I must overcome in my life to reach my goal of happiness.

I have posted/ranted about my particular case of Keratoconus, because this blog is my personal space to rant about any situation I’m going through within my life – good or bad. For a long time, my disease was a main focus, but after my keratoplasty surgery it hasn’t been a focus for me to rant about for a long while.

My surgery was a huge success, I am able to see very well with my left eye, and I’ve said farewell to my screen reader months ago. The surgery was such a great success that the Mayo Clinic asked that I release my case for further study among their experts and students, which I didn’t hesitate to sign those consent forms. And it was so cool that I was able to read and sign directly on the line of the forms, something that I wasn’t able to do before the surgery. Anyway, if my case has a tiny chance of improving future procedures for others, I’m all for it! ^_^v

However… I cannot and will not suggest procedures for anyone with this disease. I am NOT a doctor or expert, I do not play one on TV nor on the internet. Every case of Keratoconus is different for different people, there are different stages of the disease, so it would be foolish and negligent for me to suggest any one procedure to someone else.

What I DO suggest is that anyone who is suffering with the disease to seek expert help IMMEDIATELY. Do not wait around, by any circumstances, because if the disease is left untreated it WILL become a lot worse and your options for treating it dwindles. I’m speaking from experience on that, I waited far too long and my only option for my case was keratoplasty, which is a very invasive procedure. I missed my window of opportunity for Intact corneal surgery, which would have been a lot easier on me.

And I do suggest that a person with Keratoconus search directly for those who have many years of experience in the disease and treating Keratoconus. Not every ophthalmologist specializes in the disease, therefore they may know very little on how to treat your case or be unaware of all of the available procedures for you. The Mayo Clinic often have direct experts in the disease, if you have one located near you and they accept your insurance, it doesn’t hurt to go check it out. For any other place, I’m unsure and unable to give sound advice about that.

If your ophthalmologist claims that he or she have many years of experience in treating Keratoconus (my eye specialist has 20+ years, by the way) , then you’re probably in good hands. Remember, NEVER settle for the conclusion of “There’s nothing we can do for you, until the disease becomes worse.” That’s not true! There’s plenty of options out there for those in the beginning/mild stages of the disease and an expert wouldn’t tell you to wait.

And beware of those who would tell you that any one procedure would “cure” your disease, as there is no real cure for it at this point. With these procedures, you’re just buying time for sight, until there is one. I bought myself 10+ years for my left eye and I’m so very grateful for that!

This is a very terrible and heartbreaking disease. I understand the desperation of wanting to correct it and to find some kind of hope/support for it. However, I’m kind of useless in that regard, I can only offer the above suggestions. You may do better in joining the KeratoconusGB groups on Twitter and Facebook, with many other members going through similar issues, for actual emotional support.

Picture: anime girl resting on bench.This is not a blog about the disease however, I created it after the shock and devastation of my diagnosis two years ago. I created this blog as a hub for me to express my frustrations, not only about my personal eye troubles, but about other situations within my life. Case in point, I have written and posted 120 entries here, and out of them only fourteen posts are about or briefly mentions about my eye disease (including this post).

I share this blog online for my pals and family to take a gander at. I had NO clue that anyone else would read and follow it, although I am flattered and don’t mind it. I’m appreciative of everyone who likes, comment, or follow my blog of scribbles. Thank you very much! Hugs! (っ´▽`)っ

I can’t fathom what my future will bring for me and that’s scary sometimes, the not knowing part. However, whatever happens, I shall blog it here as usual.

Thanks for reading, as always! And today’s song is: Wind by Akeboshi. ^_^v

-D

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s