My Wife is Now Legally Blind

[M.D. Holloway]

My bride has the misfortune of inheriting Retinitis Pigmatosis (RP) which in laymen’s terms is a genetic disorder that over time degenerates your optic nerves. I have known this when I met her and when we met she had only a slight issue with her right eye. The degeneration can happen at any rate and at any time in your life. Your peripheral and night vision is normally affected first. Your vision can remain slightly altered or you can become blind to the point where you do not see at all. There is no cure or treatment.

Over the past several months we have noticed a drastic decline in my Wife’s vision. Three months ago I brought her to the eye doc and our fears were confirmed. She has no vision in her right eye and her left eye has maybe 10% vision at best, about 20/40 for what she can see but with no peripheral at all – sort like looking through a pipe.

She has been genetically tested and has the type which she may pass on to our children – about a 50% chance. This was a very major concern for her to the point where she never wanted to have children because she didn’t want to potentially pass this on to them. I convinced her that she lives a great life and if/when she goes blind will continue on. To not have kids because they may not be perfect is not a good reason. I know the odds are not in our favor but I don’t love her any less because she could go / will go blind.

To date, our children do not show any signs of RP. They have been told that Mommy doesn’t see well at night and doesn’t drive anymore and sometimes needs help. They have not been told that they have the potential to contract the disability. We will wait till they are a bit older to tell them.

We plan on living just as we always have just with certain adjustments.
I will end up hiring someone to come over and be a Mommy’s helper – drive her and the kids around if need be, help with homework and piano, and play outside. Stuff that she will need help with and things I can’t do when on the road. My idea of a Swedish or Danish teenage girl was nixed. Oh well…

So, there it is.

[KFC911]

Man, I don't know what to type, but you and your whole family have my deepest sympathy. Somehow, y'all will make adjustments, and be OK...I just know it. Be well...

[Porsche-O-Phile]

If I know anything about you and her, it's that you'll be strong enough to overcome any difficulty created by this. Best of luck to you and here's hoping that you both find the strength to continue on in face of this.

Sorry to hear about your troubles in any case.

[onewhippedpuppy]

Mike, you have the right attitude, but wow. I'm so sorry to hear about your wife, but I respect the hell out of your approach to the problem. You'll be in my prayers, this can't be easy to deal with.

[widgeon13]

Sounds like you all have the right attitude. While this may seem like a burden I'd guess it will build character in all of you. There are many worse things that could happen to you so keep the faith and I'm sure you will all survive quite well.

[Rot 911]

Damn that has to be tough for the both of you. I am sure your wife will have days when it really gets her down. You will always need to be there for her and always remain optomistic, no matter how you feel inside.

I said a prayer for your whole family.

[scottmandue]

Wow, so sorry to hear that.

Makes me appreciate the things in life I take for granted.

Prayer sent for you and your family.

[azasadny]

Mike,
I don't know what to say, except to say I'm sorry for you and your wife but I know you'll take care of her and provide the support she needs. With all of the bad financial and job news, it's posts like your that jolt us all back to reality and server to remind us of the importance of our loved ones. Stay strong!

[dhoward]

Good luck to you Mike. While I'm sure it will be a difficult adjustment, she couldn't find a better partner to help her.
Give her an extra hug from us.


Now, if she can't see, how would she know if it's a teenage Swede?

[M.D. Holloway]

She may be blind but shes not blonde...

[jyl]

Sorry to hear that. She's lucky she has you, and you're lucky you have her.

[stomachmonkey]

Sorry Mike.

[crustychief]

Sorry to hear about your wife's vision.

[Moses]

Tough news, Mike. Puts my petty grievances into perspective.

Who knows, there may advances in PR treatment in your kids lifetime if they are affected. I'm glad you have kids. One thing I'm sure of, it's the love of my wife and kids that has pulled me through every rough patch I've had.

I'll keep you and your family in my thoughts.

[billybek]

Oh man, I am sorry to know of your wife's difficulty.

[rfuerst911sc]

I only know you thru this forum and we did have some email dialog last year but I can tell you are a good guy and I assume your wife is just as special. Be there for each other thru thick or thin that's what we sign up for when we tie the knot. I wish you the best and be strong.

[Heel n Toe]

Sorry to hear this, Mike. She is a very fortunate woman to have you as her husband because it's obvious you're gonna step up and be everything she needs. Kudos to you, and I'm sure the kids will step up, too.

[kach22i]

Sorry to hear about this, and I was just thinking about that Bjork film a few days ago for no reason at all.

Is there any hope that stem cell research (under new a administration) will hold any hope?

Stem-cell treatment helps restore eye-sight
http://www.telegraph.co.uk/scienceandtechnology/science/sciencenews/3344413/Stem-cell-treatment-helps-restore-eye-sight.html

http://whyfiles.org/102spareparts/2.html

EDIT:

A NEW STEM CELL PROCEDURE FOR RETINITIS PIGMENTOSA (RP)
http://www.transworldnews.com/NewsStory.aspx?id=27991&cat=12

Contact:
StemCell Pharma Inc.
1701 East Katie Avenue #20
Las Vegas, NV 89119
Phone: (702) 383-5893
Fax: (702) 733-9505
dralfredtsapse@yahoo.com
www.stemcellpharmainc.com

http://www.transworldnews.com/newsstory.aspx?storyid=8154&ret=news.aspx&cat=business

RETINITIS PIGMENTOSA (RP) PATIENT GETS STEM CELL IMPLANT

On Apri129, 2006, a Nevada physician performed in a patient with RP, a procedure that might be a first of its kind, namely an Amniotic Stem Cells, Telomerase Enhanced Implant developed by Alfred T. Sapse M.D. (ret) the President of StemCell Pharma.

The post implant follow-up of this case, Unique of its type, will be done by periodical electro retinograms, and ophthalmic evaluations.

Dr. Sapse is an Ophthalmologist, former Assistant Professor in Ophthalmology, at the University Eye Clinic Geneva (Switzerland), Assistant V Dept of Bacteriology UCLA, and Director of the Laboratory of Ophthalmic Immunology, Cedar Sinai Medical Center in Los Angeles. He published more than 20 research papers on the immunology of the eyes in prestigious AMA Journals, including the JAMA, Nature in London and in many other countries; for which hc had been awarded the title of NIH Special Research Fellow.

His involvement with RP and placenta implants goes back more than 50 years in his native Romania, and was rekindled about ten years ago with the discovery of stem cells, one of their main sources being placenta. The main component of Dr. Sapse's invention is the Amnion, a tiny layer of placenta, capable of manufacturing embryonic stem cell, identical with the embryonic stem cells from the embryo, but minus the stigma associated with these cells.

The multiplication of cells pertaining to Dr. Sapse's invention is enhanced through a proprietary technique.

About 10 years ago, scientists, including Dr. Sapse, have reported the presence, in RP patients, of antibodies to retina. While the presence of these antibodies does not necessarily mean the presence of an autoimmune disease, the discovery of another player brings about more credence in the existence in the RP of an autoimmune component and that is the presence in the retina and vitreous of cortisol, an immune suppressive hormone found in elevated levels in other autoimmune diseases such as Mutiple Sclerosis (MS), Lupus (LE). Scleroderma, Hashimoto's, and Rheumatoid Arthritis.

Regardless, the treatment of RP with stem cells might bring about some answers to this hypothesis.

[charlesbahn]

Could be a blessing- she'll always picture you in her mind as the handsome hunk she married, not the over weight balding person you've become.

[Seahawk]

Floored, Mike.

You have a unique personality, a gift that your family will need.

You guys will rise to the occasion, of that I am sure.