Veronique,
I am sorry about the confusion. I now live in Tennessee, but I was born in Iowa
and went to the university of Iowa at Iowa city when I was young to be diagnosed
and treated. But, I was not diagnosed with wagner's disease (as far as I know)
until after we moved to Arizona. The Dr. in Arizona who diagnosed me with
wagner's disease is Dr. Leonard Joffe. Since I am not able to remember the names
of the Dr's that I saw in Iowa city, I suppose it's possible that I was one of
his patients. I was told by Dr. Joffe that he had read about me in a magazine
article, so....? Any way I hope this clears up the confusion.

Gisele

--- In wagnersyndrome@yahoogroups.com, "Veronique" <nasveronique@...> wrote:
>
> I thought you said that you were in Iowa.
> Thomas Minas was the dr who examined some relatives of the Iowa family who was
examined by dr Brown (in Iowa). In the publication of 1994 about this family
they mentioned Thomas Minas.
>
> --- In wagnersyndrome@yahoogroups.com, "Gisele Hayslip" <i8b4uin55@> wrote:
> >
> > The dr in arizona that examined me, my children, and my parents was dr
leonard joffe. I've never met a dr. Thomas Minas. Why?
> >
> >
> >
> > --- In wagnersyndrome@yahoogroups.com, "Veronique" <nasveronique@> wrote:
> > >
> > > Hi Gisele
> > > Do you know if you family in Arizona were ever examined by dr Thomas
Minas?
> > > Veronique
> > >
> > > --- In wagnersyndrome@yahoogroups.com, "Gisele Hayslip" <i8b4uin55@>
wrote:
> > > >
> > > > I was reading through the messages on this website and lo-and-behold
there were messages from my daughter, dated March 22, 2010. I now have the
insurance to be able to see the Dr's that I need to see. Perhaps Vanderbilt
would be a good starting place for me. I'll let you know what happens.
> > > >
> > > > Gisele
> > > >
> > > > --- In wagnersyndrome@yahoogroups.com, "Gisele Hayslip" <i8b4uin55@>
wrote:
> > > > >
> > > > > Thank you for your response. I have never met Dr. Stone. I was going
to Iowa city for my eyes in the mid-to-late 1960's. I am sorry that I do not
remember the names of my dr.'s from that time. The Dr. who diagnosed me in 1983
is Leonard Joffe. He has a pratice in Tucson Arizona. I have a niece who lives
outside of Phoenix.
> > > > > I am not sure of my ancestors, but it is possible. My father was of
european decent although I am not sure where in europe.
> > > > > I now reside in Nashville Tennessee. Do you know where I can find a
close by Dr. who knows about wagner syndrome? and how do I go about getting
tested for it?
> > > > > After reading your response, I am now more than ever not real sure of
the diagnosis. I have recently been told that my hips did not form properly
while I was growing and I have had both hips replaced, plus I have had hearing
problems all my life. So it is important that I have a correct diagnosis. Not
just for myself, but also for my children and grandchildren. Any information
along those lines would be greatly appreciated.
> > > > > Once again, thank you for your response.
> > > > >
> > > > > I am
> > > > >
> > > > > cencerely
> > > > >
> > > > > Gisele
> > > > >
> > > > > --- In wagnersyndrome@yahoogroups.com, "Veronique" <nasveronique@>
wrote:
> > > > > >
> > > > > > Dear Gisele
> > > > > >
> > > > > > Welcome to the website! I understand that you are worried about your
children.
> > > > > >
> > > > > > Let me introduce myself: not only am I the webmaster, but I also
started research on Wagner syndrome for my thesis. I also belong to a large
Dutch family with Wagner syndrome.
> > > > > >
> > > > > > As far is known there are only 2 families with Wagner syndrome in
the US. One in Durham (NC) and one in Iowa, thought part of the latter family
lives in Phoenix.
> > > > > >
> > > > > > Interestingly last week I had contact with professor Ed Stone at the
university of Iowa. They published about their family in 1994/1995. So before
that a diagnosis of Wagner was not made in Iowa. I asked Ed Stone if he would
establish the exact mutation in 'his' family and he did. So you and your
children can be tested for this disease. Do you know dr Stone?
> > > > > >
> > > > > > Stickler syndrome is a systemic disease with problems with joints,
hearing deficit and cleft palate. The ocular problems resemble that of Wagner
syndrome. Some people with Stickler Syndrome only have the ocular features.
These people wrongly might have had a diagnosis of Wagner syndrome. For more
information on Wagner syndrome: www.wagnersyndrome.eu.
> > > > > >
> > > > > > I also asked Ed Stone if his family -he says from Northern European
descent- originate from the Netherlands as this specific mutation is also found
in a Dutch family. Do you have Dutch ancestors?
> > > > > >
> > > > > > Veronique
> > > > > >
> > > > > >
> > > > > >
> > > > > > drome@yahoogroups.com, "Gisele Hayslip" <i8b4uin55@> wrote:
> > > > > > >
> > > > > > > hello.
> > > > > > > my name is gisele and i live in the u.s. i just recently found and
became a member of this website.
> > > > > > > i was diagnosed with wagner's disease (wagnersyndrome)in 1983 but
had been receiving treatment for it for many years. i was a known patient at the
university of iowa at iowa city for many years, but was not told at that time
that i had wagnersyndrome.
> > > > > > > i have had a retinal detachment,several cryotreatments,several
laser treatments,catarac surgery, along with a host of other surgeries.
> > > > > > > i am now 55yrs old with 2 grown children. when they were young,
the doctor who diagnosed me examined them for wagnersyndrome and said that they
did not have it at that time.
> > > > > > > my daughter is now showing signs of the disease. she is only 26yrs
old. she has night blindness, and is developing a catarac. i have told her how
important it is to be diagnosed as early as possible and to have her 2 children
checked for the disease.
> > > > > > > i understand that there is now a test, genetic test that can be
taken to determine if i actually have wagnersyndrome or stickler disease. does
any one know what the difference is? i have never heard of stickler disease.
> > > > > > > i am hoping that this website can help with some of my questions
and concerns reguarding this medical problem.
> > > > > > > if you have any suggestions or just want to chat please contact me
at my email address and i will be happy to chat with you. my address is
i8b4uin55@
> > > > > > > looking forward to talking to someone who undeerstands what i have
been going thru all my life.
> > > > > > >
> > > > > > > i am sincerely,
> > > > > > >
> > > > > > > gisele
> > > > > > >
> > > > > >
> > > > >
> > > >
> > >
> >
>