Saturday, February 12, 2011

Cone Dystrophy

Okay...this post is long overdue...but it needs to be posted. It's gotten to the point where all friends and family need to know and understand a little bit about Cone Dystrophy.
Two and a half years ago, in the middle of finals at CCMS, Jacob went to see an eye doctor to up his prescription and the doctor noticed that something was going on with his vision. He had horrible vision for a 29 year old. So the Dr sent him to a specialist, who sent him through numerous tests and after weeks of getting wires put in his eyes, electric scanning and other nasty tests Jacob was diagnosed with Cone Dystrophy. The diagnosis was awful to say the least, as little is know about it, and there is basically no treatment. And the Dr told us to stop having kids and be sure to get Kaylie tested....well we had Aaron anyway....and life goes on.
So the reason we are coming out about this, is that it appears to be getting worse...and it is only a matter of time before Jacob will have to pass up his driving privileges, which is devastating to say the least....especially because he is such a huge car fanatic.
Here is a little run down of the disease:
Cone dystrophy is inherited....meaning our kids are at risk, Jacob's siblings and their kids are at risk too.
Symptoms of cone dystrophy are: vision loss, the onset can be anywhere from teens-sixties. Sensitivity to bright light, and poor color vision. Jacob sees the best at dusk, or on overcast days, and he has to wear special sunglasses for watching TV and working on the computer, and just being outside or in bright lights. Also he has to wear a second shade on his sunglasses so he can drive.
Vision usually deteriorates slowly but it can get as bad as 20/200 rapidly in some cases.
It is a type of macular degeneration, which is usually an age related disease (he has the eye sight of a 70 yr old.) It is located on the back/ inside of the eye....so no laser surgery or any surgery for that matter will help.
The only thing that looks promising is gene therapy (inject genes into the eye)....but cone dystrophy has yet to be explored . Right now, we are just trying to get him to his eye Dr regularly, and we stay on top of vitamins and herbs....and we are constantly looking into alternative treatments.
So...just so everyone knows....if you see Jacob and he seems to be ignoring you...he isn't, he just can't see you, and he is very self conscious about this. He would like you to just walk up to him and talk to him...and if he can look at you long enough he should be able to figure out who you are.
This picture is basically what he sees (I'm not sure his is this bad)....but of course it varies from day to day and in different lights he can see much better:
It's humbling to tell everyone about this...just because we don't want anyone to worry about us. I will be honest and say that this is a huge struggle for both of us, but what can we do?
This whole eye thing further complicates our whole unemployed situation...as we always thought we would just go to another mortuary or open our own after getting laid off, but as his vision deteriorates it's obvious that it is a field that we probably will have to abandon (as it requires a lot of driving.)
We're still trying to build a couple businesses, between mine ( www.bedbuggs.etsy.com ) and his website ( http://bad-a-body.com/ ), and he is helping my dad build his business. If all else fails, we may end up going back to school.
Un-employment is long gone....and we are literally living off of faith...day by day. A lot of people question me as to why I just haven't gone back to school and gotten a job, well....I know that I am supposed to raise my kids....that means being at home with them. And with my shop we've been able to barely pay bills and keep me home. So our prayers our answered in that aspect! I want to thank everyone who has kept us in their prayers...we can defiantly feel them...and if it is alright, I would like to ask that you keep praying for us over the next few months...while life plays out. We are still living in my grandparent's home while they are on a mission, but as time gets closer to them coming home (August)...the future becomes much more uncertain...and naturally, my anxiety gets a lot worse.
Other than that we are okay...yes we are struggling....but we are surviving. Heavenly Father works in mysterious ways...and this one is certainly still a mystery, but the lessons that I have learned over the course of the last two years are priceless, and I wouldn't trade them for the world....nor would I wish the experience and process of learning them on anyone.
I will try to do better about keeping everyone posted on what is going on! Thanks Again for all your love and support...you have no idea how much it means to us!

10 comments:

Cheryl said...

(tears in my eyes) I'm so sorry and you two are so strong. My prayers are with you each day!

We are actually moving to Arizona in a couple months so I was already planning on buying a couple of your pillows. Honestly they are the cutest pillows I have seen.

Thanks for posting this. I can't imagine it was very easy. xoxo

Brittany Rigby said...

I am so sorry to hear this! If there is anything I can do please let me know. I am glad that your shop is doing well! I will be praying for you and hope that all goes well for you! Love Brittany

Traci said...

Hi Krista It's Traci (Smith) Hansen. I found your blog...I hope you don't mind. I heard about your husband's condition through Brad's parents. You've been in my prayers too. I admire your faith and hope that the Lord's plan for your family will become clear to you. And may I say, I missed hearing your lesson last month! ha ha I'll send you an email to access our blog (it's private) if you want to. Sometimes it's fun to keep in touch that way!

Brent & Ashlie Eborn said...

Krista, you and your beautiful family are in our prayers. I can sort of relate with your husband's cone dystrophy. Brent has X-linked Retinoschisis, which isn't severe now, but can eventually lead to blindness and can only be treated with a new retina. It's totally scary to think that he might go blind one day, but we're hoping that with stem cell research they might be able to fix issues like his and your husbands. Hang in there and let me know if there's anything I can help with!
You have such a wonderful talent with your pillows tutus and bows. They are simply AMAZING! As soon as I figure out what I'm doing for Everlie's bedroom I HAVE to order one :)

Rachel said...

Oh Krista! I forgot about Jacob's eye problem! I do remember that he has color blindness problems from when we played Wackee Six together. I am so sad to hear that your family is having so many trials right now. I am amazed at the faith that you are keeping in spite of it all. I am thinking of you and praying for you.

P.S. Your kids are adorable. I wish I could meet Aaron. You are a wonderful mother!

Austin said...

We love you Krista (and Jacob) Thanks for the update, we hadn't heard all the details - you two are amazing people.

Nathan & Gemma said...

Krista, my name is Gemma I was friends with Jacob and his apartment in college. I cam across your blog from a friend and became an instant fan of your pillows. You are insanely talented! I love to sew but could never create what you do. It's like you are creating art out of fabric I love it. However, I read your post and it just breaks my heart to hear about your trials and what you are both facing. We pray that the Lord will pour out blessings upon you and provide you with your needs at this time. If you get any ideas what we can do let us know we wish we had a million dollars, we would share!

shizzy90 said...

Hey there Krista,

You don't know me, but I must say that I've been moved by this blog..

I too have Cone Dystrophy so i can relate to what Jacob has gone through. Although, i do think that the type i have is slightly different to Jacob's. I was born with it and it seems to be improving with time. I still have terrible vision though :( I have some of the same problems as Jacob, for example, people feel that i ignore them and consider me arrogant but its cos i just don't see them from a distance...
I've just written my first blog and i based it on my condition. I hope you can read it out to Jacob and let him know that he is not alone :) http://shizzy90.wordpress.com/2012/09/29/conedystrophy/

shizzy90 said...

Hey there Krista,

You don't know me, but i must say that i've been touched by this post..

I too have Cone Dystrophy and i can relate to some of the things that Jacob may be going through..

Stay positive, it's the best way to deal with it :)

Here's a link to my blog on Cone Dystrophy. I hope you can read it out to Jacob and let him know that he is not alone

http://shizzy90.wordpress.com/2012/09/29/conedystrophy/

Samuel Lamp said...

this is kinda a breath of fresh air for me. to know that someone else out there shares my pain. i was diagnosed with the same thing in almost the exact same way 2 years ago. i am 2o years old right now and get optic migraines, very sensitive to light, i wear sunglasses all the time and i use ZoomText on my computer. i dont drive anymore and my vision is corrected to 20/240 at best in my right eye, and the recognizing people thing is EXACTLY where i am too. i understand exactly what Jacob is going throguh.