Duane's Syndrome

[diane4]

Anybody know of any stem cell therapy that can resolve Duane's Syndrome?

[John C Hagan III, MD, FACS, FAAO]

=

[kevin669]

Hi there.  I just stumbled on this discussion while surfing around late at night.  I'm a 22 year old male who, like your son, has Duane Syndrome.  I've had it since birth.  I gotta say, I sympathize a lot with your son, as I was also made fun of quite a bit through elementary, middle, and even high school.  I've had to cope with a lot over the years, and I know that sometimes peers can be ruthless.  I'm not going to pretend I have any more experience with this defect than your son, as I am only 2 years older, but one comforting thought I hold onto is that if people don't want to be your friend because of the way you look and don't trouble to see past the surface, those aren't really the kind of people you want for friends anyway.

The ancient Persian poet Omar Khayyám wrote:

The Moving Finger writes; and, having writ,
Moves on: nor all thy Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all thy Tears wash out a Word of it.

To me that means you just have to accept the things you can't change, and make sure that you make the best of the things you can.  I hope that you pass this on to your son if he is feeling angry at the world, I know how hard it all is.  He is not alone. Never alone.

[John C Hagan III, MD, FACS, FAAO]

Nothing can be done to make the eyes perfect. If there is a large face turn a pediatric eye surgeon can usually move the eyes straighter to get rid of the face turn. However the eye does not move normal and the lid still moves up or down depending on which way the person is looking.

Most Duane's Syndrome patients learn to move their face and neck and keep the eyes in the straight ahead position where the eyes and lids look the most normal.

We all know high functioning, high achieving people that have lost an eye, arm, leg, that are in a wheel chair or have a major visible disability. It's likely your son's biggest problem is anxiety, depression, low self esteem or a social anxiety disorder.

He would likely benefit from seeing a psychiatrist. The problem will never go away, he needs a better way of dealing with it.

JCH MD

[alison121]

that is reassuring to know thank you.  however my son is 20 and although he saw eye specialist when he was a child they have always said there is nothing they can do.  he wore glasses and patches but now doesnt.  he was supposed to see a psychologist but refuses to go.  he went twice and that was it.  i dont know what to do!??

[John C Hagan III, MD, FACS, FAAO]

Lorraine: I have taken care of kids with Duane's that have been class President,  class validictorial,  and been Phi Beta Kappa and become doctors and dentists.

Your child should be under the care of a pediatric ophthalmologist, a good pediatrician and you should discuss with the pediatrician if your child needs to see a child psychiatrist.  

JCH MD

[alison121]

my son has duanes and it is a causing him a great deal of distress.  he will avoid eye contact with everybody which impacts on him socialising.  he will not mix and has no friends.  surely the social impact of eye conditions such as this has to be considered.  i for one really hope that stem cell research will one day cure eye conditions such as this to give people a normal happy life.  

[John C Hagan III, MD, FACS, FAAO]

There is a huge flood of genes causing human disease being identified since the sequencing of the human genome was completed.   It is not likely that much research will be done on Duane's using stem cells given that Duane's does not cause blindness. Research resources and research money is limited (Especially in England) and these are being used mostly on disease that kills, blinds or cripples.

JCH MD

[terryi]

I understand that the mutated gene responsible for the syndrome was isolated in late 2008 by Morefield Eye Hospital and Boston Children's Hospital. Will this not permit stem cell research to begin, if it has not already done so.

[John C Hagan III, MD, FACS, FAAO]

No way and none in clinical research.

JCH III MD