I Have Star-Gardts Pt. 1 (Symptoms and Diagnosis) ~ Can U Dig It???

[sicandoverrated]

ACT advanced cell technlogy are going to start clinical trials Q1 of 2011 for Stargardt and AMD so don't give up hope.

The londonproject is going to start in Q4 with trials vr AMD and eventually other eye problems. Its is wat keeps me going.

[ttopcar]

@sicandoverrated =) I've never given up hope =)  Thanks for sharing the info!

[hubb123456]

Hi. I have Stargart's too. You mentioned that Stargart's is hereditary. That's correct. But it does not skip generations. It's a recessive disease meaning both of your parents where carriers of the defective gene. So if your partner (father of your child) was a carrier, your child has a 25% chance of also having Stargart's. The good news tho' is that the odds of your partner being a carrier is very slim.

[hubb123456]

Hi. I have Stargart's too. You mentioned that Stargart's is hereditary. That's correct. But it does not skip generations. It's a recessive disease meaning both of your parents where carriers of the defective gene. So if your partner (father of your child) was a carrier, your child has a 25% chance of also having Stargart's. The good news tho' is that the odds of your partner being a carrier is very slim.

All the best.

[Tubaltoe]

Great job, Michelle! You are a brave woman. My brother and I have been dealing with Stargardt's for over 20 years. We're botyh at about 20/200 and seem to have stabilized years ago. We need willing leaders like you in our community!

[ttopcar]

Thank you so much!

[sammers41]

i have stargardts to you just explained my life

[ttopcar]

:-)

[hope4lyf1]

yep, ur tellin me, lol. I about crapped my pants

[hope4lyf1]

yeah no problem.. you know i go to a 2 room schoolhouse where i live and my mom is my teacher.. there are 8 students including me, turns out, one of the kids has stargardts as well, its so rare! and i live 100 miles from any town way out in the sticks, crazy huh?

[ttopcar]

LOL...that IS crazy!!!!!!

[hope4lyf1]

I have stargardts as well. I am 16 years old was diagnosed at age 10. It seems to be most common in people in blue eyes my doctor said, I have blue eyes. I have 20/60 vision right now. when I was 10, it was 20/20.

[ttopcar]

Wow...never heard of the "blue eye" theory. At least not for humans lol. Thank you for sharing that.

[adeer2u]

I have it too, I am also an african-american female. I am having a hard time maintain a a job with the disease. I was diagnosed in 2004 with symptoms in 2000. Are there any new things out there that helps? I am so scared not to be working wither.

[ttopcar]

There ALL SORTS OF GADGETS to help the visuallyimpaired. I'm a client of Division of blind Services. They assist me in my schooling and with obtaining visual aids. You may have the same thing in your state or a Lighthouse for the Blind. All of these are state agencies..so I would recommend hitting the phone and getting the services that you deserve. Especially if you are already working..they can help you with visual aids so that you can stay working..that's their goal in the long run.

[coolkittenwinx]

I'm surprised it took so many eye doctors to diagnose you. Stargardt's disease has unique visual characteristics (viewed under a slit lamp or retinal photo)

[ttopcar]

I never said that I was seen by multiple doctors. I went thru multiple tests because they were trying to rule out that my other health issues weren't the culpit for the vision loss.

[TheParentProfessor]

Maybe we could meet sometime? I still drive but it's hard to say for how much longer. I think you are on to something in thinking counseling may be a calling for you. Your candid descriptions of what it's like to have Stargardts were powerful and truly spoke to calm the terror that I am barely keeping at bay at this point in time, I have so many questions as you can only imagine...

[TheParentProfessor]

I live in Florida too, up in Pensacola. I travel some to the Tampa area (I am a public speaker for the Florida department of education and I travel around doing parenting and reading workshops for them).

[TheParentProfessor]

I am typically a strong person, but this has thrown me a blow I don't know how to deal with. I have never met anyone else who has this disease and just seeing and listening to you talk about it today on YouTube was sooooo very very helplful in helping me deal with my emotions...knowing I'm not alone and that other people are experiencing similiar frustrations in going through their everyday lives.

[TheParentProfessor]

I am 44, a mother of foiur, and was just diagnosed a few months ago, I have really been struggling against an overwhelming sadness and I just can't seem to get in touch with the part of me that can meet this problem head on and deal with it.

[TheParentProfessor]

MIchelle- YOU were a GODSEND to me today through your three videos on Stargardt's. I really needed to hear someone with the disease talk about it, and there you were on YouTube. Thanks.

[ttopcar]

Wow...I am definately here to talk and answer your questions the best I can...and if I can't..I'll steer you to someone that can. Thank you so much for sharing and I hear you on how it helps knowing that you're not alone. You're probably going through everything that I went through and still go through at times so if you need to talk I'm here.

[shaunfraser8]

Thats what i've been told too every since i was 8 i think once it gets to a certains stage it remains the same, i take supplemnts now though and thats helpted, it's great to see that your so open and tell it how it is most people i know with eye problems keep to them selves

[ttopcar]

You know...and that's why so little info is out there about these diseases and how they begin and can be prevented from worsening such as Mac Degen. No one wants to talk about it and like I said in my video, it took me a minute to feel comfortable enough to talk about it on video.. I was expecting comments from the 40 somethings with vision problems. Having you barely 20 somethings comment has been an eye opener...pardon the pun LOL

[suziekewxo]

i was diagnosed at 11. at that point i was about 20/200 and was told it would stay stable. it did for about 12 years. but sometime between ages 23-25 after my first child was born it went downhill. i'll be 29 the end of next month and its about 20/400 in both eyes. it has been fairly stable the last 3-4 years as far as tests go, but i've heard from others who've been told that too. hope you'llfare better.

i've always been candid about it myself, but never thought to make a video. hmmm....

[shaunfraser8]

i was diagnosed at aged 9 ma vision was 20/60 or 6/18 in the Uk its been stable now for 9 years , siince i started using Micro current stimulation i can see 1 line more so i pray it doesnt get worse, i was told when you stop growing it stops degenerating n i was fully grown by 13, LOL

[shaunfraser8]

aww i've got the disease too i had it when i was 8 n it's been stable for 10 years now n luckily my left eye is still ok, can't see in my right eye though

[ttopcar]

Wow...and you're young too. I've been told by and Opthalmologist that there's a good chance that my vision will remain where it is and not worsen. That would be nice. Thank you for sharing. And I read your other comment and I hope a cure is coming just that quickly.

[harison86]

i know what you mean i have stargardt's as welll

[ttopcar]

Wow..and you;re way younger than me.

When did it begin for you?

How do you "deal" with it?

Thanks for commenting ;)