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Tuesday, February 5

A Bad Few Days

Now I don't want to be a Debbie Downer for all my Loyal Readers, but I just wanted to give you a little bit of an update, and to explain my recent absence. Aside from the mad rush of covering schoolbooks, locating uniforms, buying regulation school socks and the like, I have been having a pretty stressful week. For those of you who don't know me personally (and even some of you who do!) you may not know that I have a rather rare disease. So rare in fact, that there are probably only about 200 or so cases documented in the world. The disease is called acute zonal occult outer retinopathy (or AZOOR for short) and it affects the retinal receptor cells of the eyes. To cut along and rather boring story short, I began having problems with my vision about six years ago. Basically, I developed a large blind spot in the peripherary of my right eye, and suffered from flashing, strobing lights in the same eye. I went to ther optometrist, cheerfully expecting him to say 'Oh yes, that's xxx and here's how we fix it!!' Little was I to know that my journey with AZOOR was just beginning. After many, many months of fruitless tests, examinations, scans, and lots of things ending with 'gram', I stuumbled upon a retinal specialist from Melbourne who had just happened to be reading a medical journal a few days before he saw me with a case study in it identical to the problems I was having. That was when I finally got my diagnosis. I was just so pleased that this problem finally had a name (and wasn't a brain tumor, as I had been told it may have been) that I could have kissed him. Then I naturally asked how it could be fixed. His reply was rather negative - 'it can't be'. So I got onto the Web and did my own reseacrch. There is very little out there about AZOOR as it is so bloody rare, but what info I did find was a little disheartening. Some people recovered, some stabilised and in others, the disease progressed until they were virtually blind. You can read a little about AZOOR here.
For the next 5 years (it took a year to be diagnosed) my vision stayed pretty much the same - a bad blind spot in the right eye which caused me to do dumb stuff like walk into walls, but otherwise not too troublesome. But this past week, I noticed a blind spot in my left eye, and a worsening in the severity of the blind spot in the right eye. Basically, this means that the disease is not resolving (this usually happens in 1-3 years after diagnosis) and once you get AZOOR in both eyes, the prognosis is dim, no pun intended. So, I am now living with the knowledge that I could wake up one morning and not be able to see. This is, as you would imagine, doing my head in a bit. Do you remember when you were a kid and you asked each other the question, 'would you rather go blind or deaf??' I ALWAYS said deaf, as I couldn't imagine life without the gift of sight. Now I am facing the reality of losing that gift and it is tearing me up. For those of you so inclined, please say a prayer that I will recover. I have an appointment with the opthomologist next week, but expect no joy there as the last time he saw me he said there was nothing he could do and to come back only if I noticed things getting worse. Thanks for listening to my whinge - must go and pull my socks up and stop the pity party. Catch you again soon xxx


Louanne said...

Oh Christina! Here is a ginormous hug from Texas. You will be in my prayers and I will be praying that you will recover from this. Miracles happen everyday!


Fiona said...

I have known you for nearly 20 years Cristina, and you've never told me this. I'm so devastated for you...there just MUST be a cure out there somewhere. I feel so helpless as what can anyone do to help??? I'm so sorry. Hugs and hugs and hugs.....

Cristina said...

Thanks guys for your prayers and hugs. Fiona - I have never told you because it has never been too much of an issue! I am only concerned now as there is a direct threat to my vision, wheras in the past it has been a bit of a nuisance, but not too threatening. Unfortunately there is literally NOTHING that can be done. There are so few reported cases that no one really knows what will happen. The existant literature does say that if the condition hasn't resolved within three years, and the other eye becomes involved, things aren't looking too flash (once again, no pun intended!!) As to what you can do - keep on being my friend and put up with my grumpiness, that's all! Hugs to you, xxxxx

OziMum said...

I wondered where you been hiding. Crappy, crappy news. Get rid of Debbie Downer, I want Suzie Sunshine back! In all seriousness, you will be added to my prayers. Have you tried putting sticky mud in your eyes... that worked for a bloke in the Bible?!

I hope you get good news.

Kelly & Sindy said...

My prayers are with you!!!! Love all pics!!! Stop by Allie's blog
you have been TAGGED!!!

Take Care,


Anonymous said...

Christina....so sorry. I will be praying for you. Hang in there...CTG from RQ..

Anonymous said...

I have this too and have been desperately seeking someone else who has it. Came across your blog by accident(design?). Please email me at bumboandpunky@aol.com and put AZOOR in the subject. I am married with 8 children.
Laurie in WA

Anonymous said...

Hello Christina,

I know exactly what you're going through - your story reflects mine. I've had AZOOR for about a year now and everyday is so frustrating because you're mad that it hasn't gone away but also grateful it hasn't gotten any worse. Since it's so rare, I have nobody to talk to about it. I'm 20 years old and live in St. Louis, Mo. Drop me an email (MCCalhoun2005@yahoo.com) or AIM MCCalhoun2005. Hope to hear from you, you're in my prayers.

Mary Calhoun

ashley said...

Hi, i know exactly what you are going through. About 9 years ago I was diagnosed, 10 years ago started down the journey to be diagnosed. Followed all the same steps and aggravations. The only difference is that the AZOOR is in my left eye.
About 5 months ago, i went back in for my yearly visual field to benchmark what my eye has been up to. Feeling pretty confident that it had pretty much stablized and I go on my merry way. Unfortunately that was not the case. My doctor noticed a blind spot in my right eye.
I guess the reason I am telling you all this is because my doctor, Dr. Janet Davis, has taken a more proactive approach by putting me on steroids and cellcept in hopes to stop the virus if it is progressive. She is on the forefront of this disease and studied under Dr. Gas who discovered and named AZOOR. With that said she is knows her stuff.
I live in Lake Worth, Florida which is about 1.5 hours south of Melbourne, FL. Not sure which Melbourne you are referencing.
In any event if you would like to discuss the treatment I have been going through so you can talk to your doctor or have your doctor speak with mine, shoot me an email to ashwithers@hotmail.com.