Hi to All-
It's Christina, mother to Hailey and Hannah who have FEVR, and I have a
question for everyone.  I have a genetic condition called Factor V
Leiden besides FEVR.  Factor V is a clotting disorder.  I have come
across some information on this disease and some the info has indicated
that it can be a factor in some types of FEVR.  My question is...do any
of you who have FEVR also have this condition?  Thanks, Christina

My daughter has had laser treatment in one eye for her FEVR.  It was
relatively painless for her and she has not needed any follow-up.
("Relative" to cryo treatments in her other eye, where retina was
detaching and laser was considered too risky . . . she has had 3
cryo treatments, 2 with minor discomfort, 1 with horrible,3 week
recovery)> Not sure how much detail you want, but here is our
experience:
Jillian was 6 at the time of her initial treatment.  We are lucky
enough to live about one hour from Beaumont Hospital in Michigan and
arrived at the hospital early morning.  After general physical
examination, she received 3 sets of eye drops
(dilating/antibiotics/etc).  She complained of stinging, but it
passed quickly.  She was taken to OR where she received some "sleepy
air", then IV was inserted (anest/pain/fluids).  The intial exam
took about 30 minutes. Dr. Capone (fabulous) came out and let us
know her right eye could be treated with laser.  Her left eye was
more troublesome and he preferred using cryo.  We agreed, he
returned to OR for about 20 minutes, came back and said things went
well.  After another hour or so, she started waking up and we took
her home after another couple hours.  Her laser treated eye looked
untouched, perfectly normal and caused her no trouble.  The cyro eye
was UGLY for a day, then very red for another few days.  She has
since had 2 follow-up cryo treatments on her left eye and needed no
further Tx on her right (laser) eye.  We actually return to Beaumont
Wednesday for another EUA (exam under anestesia) and possible
treatment.
We wish Rose best wishes and hope her treatment  goes well.  (Our
younger boy is also FEVR free.)  Good Luck to you.

We have an 8 year old son who was diagnosed with FEVR at age 4. He had
laser treatment around his 5th birthday to zap rogue blood vessels in
his eyes (the peripheral retina, specifically). The surgery was done
on his left eye first (601 laser zaps) and his right eye 5 weeks later
(316 zaps). He had an experimental steroid (kenalog) injection to
treat some lipids collecting in his left eye, which required us to
give him eye drops for a year afterward to reduce the possibility of
him getting glaucoma. He also had to go to the doctor to have his eye
pressure checked frequently. That part of the procedure seemed to be
more of a problem later on when he developed a subcapsular cataract in
that eye as a result of the steroid shot. That came as a complete
shock to us because we thought we only had to worry about his getting
glaucoma. We have been advised not to get our son cataract surgery
unless his vision deteriorates significantly as this would require
changing out the artificial lens periodically as he grows and cataract
surgery is experimental in children. Although it doesn't really affect
him, he has scars from the laser to this day. He has no peripheral
vision, but that was a result of the FEVR not the surgery/scar tissue
from the laser treatment.

From our experience I would say go ahead with the laser treatment. If
you don't, I think she could develop a detached retina. The parts of
the eye that get zapped do not help with the vision anyway (because
there are no blood vessels there since she has FEVR), so you aren't
losing any functionality. However, I would be prepared with questions
about alternate treatments to steroids.

James

Hi Kerrie,

We have a daughter just a little younger than yours. She has FEVR in
both eyes, but more noticeably in her left. At 1 y.o. she had a scleral
buckle fitted to her left eye to prevent any detachment. This was done
in Japan at Fukuoka University Hospital (who are just wonderful!).
There were a number of children in the same ward who had laser surgery.
Some of it seemed very invasive but, from my understanding, a general
rule was that the later FEVR was diagnosed the more invasive the
procedure tended to be. Sorry I can't offer much more advice than that.

We would be interested to hear about the doctors you are seeing in
Australia. I'm originally from Adelaide but one of the things that has
kept us in Asia is the access to good quality care for our daughter.

Good luck and best wishes,
Nic

Hi

We are from Australia and our daughter Rose has fevr  (most probably a ressesive
form as
there is no family history of anything similar in either family) and is also
very myopic.
Fortunately her little brother does not have fevr. She is 6 and recently is
showing signs of
exudate. Her retinal specialist is going to get another specialist he works with
sometimes to
review her as well, as he is considering whether he should do some laser work on
her eye
now or wait and see. Unfortunately it is her better eye that is showing
problems, with her
vision in this eye currently 6/21. Her vision in her other eye only is about
6/60 with macula
problems.

Could anyone who has had this treatment give me an idea of what she would
experience
with this treatment as I have no idea how to explain the surgery to her if we
need to do it.

Thanks

Kerrie

Promising news from a group seeking to provide relief from retinal
diseases:
http://news.bostonherald.com/news/regional/general/view.bg?articleid=1078909"

I am passing on this letter I recieved.
--------------------------------
Hi Ms. Young,

I came across your FEVR website and wanted to update you on our new
Retina Institute at Childrens Hospital of Los Angeles.  This was
recently established 6 months ago through a generous donation from a
couple who are very committed to children with vision problems.  At
their request, we are not calling it the van Wyck Dalany Children's
Retina Center.  Rather it is the Retina Institute in the Vision
Center at CHLA.  We are committed to ensuring that all children with
retinal disease including FEVR have access to the latest advances in
diagnosis and treatment irrespective of financial means.  Dr. Tawansy
is no longer with the hospital, and we will forward you updated
contact information for our center.  If you have any specific
questions please feel free to contact me.  I look forward to working
with organization to make sure that all children with FEVR get the
best possible care.

Sincerely,

Thomas Lee, MD
Director, Retina Institute
Vision Center
Childrens Hospital Los Angeles
Associate Professor of Ophthalmology, Doheny Eye Institute Keck
School of Medicine, University of Southern California
(323) 361-2299 office
(323) 361-3515 fax

Hi. I'm 17 years old and have had FEVR since I was born. It's never
really affected me much and I've never had much of a problem with it,
up until when i was 15/16 when it hit me that i couldn't do the same
things as other people my age. Most of my friends were getting mo-peds
etc when I couldn't.

My vision is around 4/20 left and 6/20 right. As I'm now 17.. It's
really hit me that I'll never be able to drive and It's only now that
I've decided i want to look into FEVR more.

I'm under Moorefields eye hospital in London, but I haven't found them
to be that helpfull the last few years. I've been put into the
childrens ward under Mr Moore when i should have been transferred to
the adults ward. When I go next, I'm hoping to get a few of my
questions answered as i've never really asked before.

I've been researching and come accross an article about stem cell
treatment thats being researched and meant to cure blind people. I'm
wondering if this is going to affect FEVR patients, or its more for the
elderly/others. The article i've been looking at is
http://news.bbc.co.uk/1/hi/health/6120664.stm .

Sorry if I've posted this in the wrong place. It's my first time on
these boards and I'm just getting to grips with things.

Thanks
Luke

Sorry, I haven't been on the board for a long time.

Our daughter was diagnosed at 8 months and then had a sceleral
buckle fitted to her right eye at 14 months in the hope of stopping
it from detaching. She's now 4 years 4 months - so far so good. She
is wearing quite strong prescription glasses and we patch her
stronger left eye for two hours a day so she won't get too lazy with
her poorer right eye. That seems to be working well as she seems to
still be able to function without too much impediment - the initial
diagnosis was that she would likely only see light and shadow in
that eye.

So it may just be good fortune, but I think the early diagnosis also
really helped. Being in Asia we have been going to the Fukuoka
University Hospital and can't recommend it highly enough.

--- In FEVRnet@yahoogroups.com, Amber Kilgore
<aliciakaitlynsmom@...> wrote:
>
> The earlier the better. My daughter is now almost 10.  She was not
diagnosed until she was 4 yrs and 3 months.  The earlier she is
diagnosed...the better you and her doctors are able to follow her
through FREQUENT check-ups.  The downside to being diagnosed young
is that the earlier onset...the prognosis is not as clear.
>
> "michael.harris2" <michael.harris2@...> wrote:          I am
really new to this my 2 year old daughter just received NEVR as a
> provisional diagnosis after the discovery of a retinal detachment.
We
> still do not know much yet, but I was wanting to know if anyone
had any
> information on the benefits of early detection. We think our
previous
> optometrist may have noticed something and failed to inform us
about it.

Good luck, Jane. i can't begin to tell you how much this website has
helped me and my family. My 7 yo son has x-linked FEVR. we have been
going to Detroit for 2 years now for all his checkups and procedures.

we stay at a hampton Inn on stephenson very close to the oakland mall.
it is about 10-15 minutes from beaumont. DON"T FORGET to ask for the
hospital discount wherever you stay!!
the second time we stayed at this hotel, when we arrived to check in,
they had made my son "guest of the day" and had some little toys and a
ballon waiting for him. needless to say, i love this Hampton Inn!

good luck again.

hi all
i haven't posted here in ages but i wanted to let everyone know that
my 7 yo son- who has Xlinked FEVR- had an awesome report from Trese in
July. his exudate in the bad eye is 90% cleared up and we don't have
to go back for a dr visit for 6 months!
Quinn has had numerous cryo and laser and two injections of macugen (
about 9 months apart).
my thoughts and prayers are with you all.
michelle

Hi Jane,

      Dr. Trese's office is in a building that has an
attached parking garage and the hospital (we have
always entered on the North end) has valet parking,
hence, both are very short distances.  Good luck on
your visit.

      Thank you so much for the articles and let us
know how you are doing.


                            Bill



--- Jane Young MS <young1@...> wrote:

> Hi All,
>
> My doctor talked for a long time with Dr. Trese and
> I will be making
> an appt. tomorrow to see him for a short visit.  (I
> guess short)  I
> can't imagine why it wouldn't be 1 day now.  I am
> not in critical
> condition yet so I don't think I will be having
> anything done in this
> trip.
>
> I went searching on the net and decided to go all
> out since this will
> be a short first trip and I really, Really, REALLY,
> need something to
> look forward to, and will be splitting the cost with
> my Mom (she
> insists)  Very stubborn these Moms (joke, just
> kidding) She is
> great.  Never left my side once since 3 months old
> when she/we found
> out something was wrong.  There wasn't a name for it
> then and they
> didn't think they needed to put infants and young
> children asleep.
> Of course they won't remember (bull S-t).  I
> remember.  Thank god
> they are coming around now since there has been a
> lot of infant
> research done.  OK I am rambling...
>
> I am going to be staying at the Radisson Hotel
> Bloomfield Hills  It
> is 5 miles from the hospital, has an indoor heated
> pool and whirlpool
> and workout room. If I am sick from my exam like I
> was last time from
> my Fibromyalgia there is room service till 10PM and
> a fridge. and
> microwave and bottled water and coffee in the room.
>
> Thanks both of you for the info about the other
> hotels.  What do you
> think about the thickness of the walls between you
> and the next
> room?  I think we will go with taxi's this time so
> we can see if that
> will work.  I would rather my Mom be dropped off at
> the door. How was
> the walk from the car parking lot to the entrance.
> I pulled it up on
> the web and it looked long.  Actually the entire
> hospital looked
> massive.  I don't want it to be a mile walk from a
> car to a hospital
> room.
>
> Which end is the eye patients kept in???  Which end
> do you enter
> into???
>
> Jane Ann
> --- In FEVRnet@yahoogroups.com, William Hassett
> <whassett@...> wrote:
> >
> > Dear Jane,
> >
> >      I cannot tell you how sorry I am to hear what
> you
> > are going through.  Ironically, during a visit
> with
> > Dr. Trese last month, I showed him a sentence in a
> > study that said, "Progression of fundus changes
> and
> > threat to vision is rare after age 20 years".  I
> was
> > merely hoping that at some point in Isabella's
> life
> > she would be safe and I could sleep again (she is
> > seven now and completely without vision in one
> eye).
> > Unfortunately, Dr, Trese warned me that generally
> that
> > is true but, as you now know, one is not
> completely
> > certain of stability at any point in their life
> with
> > FEVR.
> >
> >      We usually stay at an Embassy Suite in Troy
> which
> > is about a 10-15 minute drive from Beaumont.  We
> stay
> > there because it has two distinct rooms which may
> > serve your purposes as well.  If that drive is
> more
> > than you or your mother are comfortable with,
> please
> > give me 24 hours and I will get the name/s of
> places a
> > little closer.  Much depends on how long you
> expect to
> > be there and how much you want to spend.
> >
> >      I have followed Dr. Trese's use of Lucentis
> and
> > he reported to me that the results have been
> excellent
> > but I have no idea if the use would be appropriate
> in
> > your case.
> >
> >      I would much appreciate it if you would
> e-mail
> > the studies to me as I, like everyone around this
> > disease, feel helpless.
> >
> >      I cannot imagine what your life must be like
> > right now but I hope you can get the help you need
> to
> > halt the current situation with your eyes.
> >
> >      I will be back to you shortly on the hotels.
> >
> >
> >                            Bill
> >
> >
> > --- Jane Young MS <young1@...> wrote:
> >
> > > Bill,
> > >
> > > Hi, Jane (composer of FEVER.net) here,
> > >
> > > I visited NIH 2 weeks ago and got some more FEVR
> > > Genetic papers for
> > > you if you want.  I can not post them in the
> files
> > > yet until I get
> > > permission from the publishers but I can E-mail
> them
> > > to you them to
> > > you if you want.  Just E-mail me at young1@...
> > >
> > > How is your daughter doing.  I posted your
> message
> > > about Dr. Trese on
> > > his link for more information under "Find FEVR
> > > Docotrs).  I got his
> > > Office phone numbers and addresses from NIH.
> > >
> > > ufortunately I have gone down hill both
> physically
> > > and in the past
> > > few weeks have been going from doctor to doctor
> and
> > > then back to my
> > > doctor at the Retina Group of Washington (Dr.
> > > Gilbert).
> > >
> > > I am now 40 years old, and a few weeks ago,
> started
> > > seeing shooting
> > > stars (little lights moving across my vision)
> It
> > > looks like my FEVR
> > > has continued to progress.  I had extensive
> surgery
> > > to stop the blood
> > > vessels near the edge of my vision/retina from
> > > growing and also got
> > > rid of the membranes that was pulling my retina
> off
> > > but the
> > > detachment and traction eventually ripped my
> macular
> > > region. We had
> > > to laser the rip to stop the fluid from
> detaching my
> > > retina.  This
> > > left me legally blind 20/200 in best eye.
> > >
> > > It seems with the new technology of ocular (eye)
> > > scanning we can see
> > > the retina and also the thin membranes which
> have
> > > very slowly grown
> > > into the vitreous gel.  The gel normally leaves
> the
> > > retina and thus
> > > it is pulling on the retina.  This has caused
> > > bleeding and exudation
> > > between my macular and and my region near my
> nose
> > > (nasal region).
> > >
> > > NIH was great for getting a 2004 and 2007
> picture
> > > for comparison.
> > > Dr. Gilbert has been the best.  He works closely
>
=== message truncated ===

Hi All,

My doctor talked for a long time with Dr. Trese and I will be making
an appt. tomorrow to see him for a short visit.  (I guess short)  I
can't imagine why it wouldn't be 1 day now.  I am not in critical
condition yet so I don't think I will be having anything done in this
trip.

I went searching on the net and decided to go all out since this will
be a short first trip and I really, Really, REALLY, need something to
look forward to, and will be splitting the cost with my Mom (she
insists)  Very stubborn these Moms (joke, just kidding) She is
great.  Never left my side once since 3 months old when she/we found
out something was wrong.  There wasn't a name for it then and they
didn't think they needed to put infants and young children asleep.
Of course they won't remember (bull S-t).  I remember.  Thank god
they are coming around now since there has been a lot of infant
research done.  OK I am rambling...

I am going to be staying at the Radisson Hotel Bloomfield Hills  It
is 5 miles from the hospital, has an indoor heated pool and whirlpool
and workout room. If I am sick from my exam like I was last time from
my Fibromyalgia there is room service till 10PM and a fridge. and
microwave and bottled water and coffee in the room.

Thanks both of you for the info about the other hotels.  What do you
think about the thickness of the walls between you and the next
room?  I think we will go with taxi's this time so we can see if that
will work.  I would rather my Mom be dropped off at the door. How was
the walk from the car parking lot to the entrance.  I pulled it up on
the web and it looked long.  Actually the entire hospital looked
massive.  I don't want it to be a mile walk from a car to a hospital
room.

Which end is the eye patients kept in???  Which end do you enter
into???

Jane Ann
--- In FEVRnet@yahoogroups.com, William Hassett <whassett@...> wrote:
>
> Dear Jane,
>
>      I cannot tell you how sorry I am to hear what you
> are going through.  Ironically, during a visit with
> Dr. Trese last month, I showed him a sentence in a
> study that said, "Progression of fundus changes and
> threat to vision is rare after age 20 years".  I was
> merely hoping that at some point in Isabella's life
> she would be safe and I could sleep again (she is
> seven now and completely without vision in one eye).
> Unfortunately, Dr, Trese warned me that generally that
> is true but, as you now know, one is not completely
> certain of stability at any point in their life with
> FEVR.
>
>      We usually stay at an Embassy Suite in Troy which
> is about a 10-15 minute drive from Beaumont.  We stay
> there because it has two distinct rooms which may
> serve your purposes as well.  If that drive is more
> than you or your mother are comfortable with, please
> give me 24 hours and I will get the name/s of places a
> little closer.  Much depends on how long you expect to
> be there and how much you want to spend.
>
>      I have followed Dr. Trese's use of Lucentis and
> he reported to me that the results have been excellent
> but I have no idea if the use would be appropriate in
> your case.
>
>      I would much appreciate it if you would e-mail
> the studies to me as I, like everyone around this
> disease, feel helpless.
>
>      I cannot imagine what your life must be like
> right now but I hope you can get the help you need to
> halt the current situation with your eyes.
>
>      I will be back to you shortly on the hotels.
>
>
>                            Bill
>
>
> --- Jane Young MS <young1@...> wrote:
>
> > Bill,
> >
> > Hi, Jane (composer of FEVER.net) here,
> >
> > I visited NIH 2 weeks ago and got some more FEVR
> > Genetic papers for
> > you if you want.  I can not post them in the files
> > yet until I get
> > permission from the publishers but I can E-mail them
> > to you them to
> > you if you want.  Just E-mail me at young1@...
> >
> > How is your daughter doing.  I posted your message
> > about Dr. Trese on
> > his link for more information under "Find FEVR
> > Docotrs).  I got his
> > Office phone numbers and addresses from NIH.
> >
> > ufortunately I have gone down hill both physically
> > and in the past
> > few weeks have been going from doctor to doctor and
> > then back to my
> > doctor at the Retina Group of Washington (Dr.
> > Gilbert).
> >
> > I am now 40 years old, and a few weeks ago, started
> > seeing shooting
> > stars (little lights moving across my vision)  It
> > looks like my FEVR
> > has continued to progress.  I had extensive surgery
> > to stop the blood
> > vessels near the edge of my vision/retina from
> > growing and also got
> > rid of the membranes that was pulling my retina off
> > but the
> > detachment and traction eventually ripped my macular
> > region. We had
> > to laser the rip to stop the fluid from detaching my
> > retina.  This
> > left me legally blind 20/200 in best eye.
> >
> > It seems with the new technology of ocular (eye)
> > scanning we can see
> > the retina and also the thin membranes which have
> > very slowly grown
> > into the vitreous gel.  The gel normally leaves the
> > retina and thus
> > it is pulling on the retina.  This has caused
> > bleeding and exudation
> > between my macular and and my region near my nose
> > (nasal region).
> >
> > NIH was great for getting a 2004 and 2007 picture
> > for comparison.
> > Dr. Gilbert has been the best.  He works closely
> > with Dr. Trese.  He
> > saw me for 4 hours and is now creating what seams
> > like a PH.D. Theses
> > to send to Dr. Trese and then talk with him to see
> > what they think
> > should be done.  Most probably a Vitrectomie to pull
> > all the
> > membranes that are stuck in my vitreous and replace
> > it with new
> > fluid.  He did this for another Post 40 year old
> > FEVR patient and it
> > cleared up the entire retina.  But I don't know what
> > they will want
> > to do until they converse.
> >
> > Long E-mail to get to my question.  Where did you
> > stay while your
> > daughter was in the william Beaumont Hospital.
> > Obviously you had to
> > stay around for post operative care and watching.
> > How long did you
> > stay there.  My mom has always been by my side for
> > every operation
> > from 2 years old until 21 years (~15 surgeries) but
> > she is 81 now and
> > still insists on being there by my side.  She still
> > gets around fine
> > but she is 81 and I wanted to tell her she can't
> > keep following me
> > forever although she does know my history and is my
> > medical advisor
> > so I kind of want her there but I don't want her to
> > be at a dive and
> > If I need to stay around for post operative care do
> > you have a
> > recommendation for where to stay near the hospital.
> >
> > I have to say what I would want is a Vitrectomie in
> > both eyes but
> > emotionally I don't know how I can walk into another
> > hospital.  I am
> > flipping out.
> >
> > I was working for the Navy and we were slowly
> > getting crunched by the
> > war taking personnel and money away from us.  I flew
> > with a team to
> > Alaska to analyze analyze something broken on a sub
> > and worked 9 days
> > with very little sleep and also got a flu from the
> > sub crew from
> > where ever they came from.  I think you can guess
> > from where.  I
> > developed Fibromyalgia a devastating neurological
> > and immune system
> > disease which has now cure.  I was up for days at a
> > time and also
> > under enormous pressure physically and emotionally.
> > I was cold,
> > cramped and tired.  Just couldn't keep up with the
> > Navy Seals on the
> > OP.
> >
> > I have had to request Disability Retirement at the
> > peek of my career
> > but said what the hell life has never stayed stable
> > for me.  I am
> > sell my house and was planning to move and rent a
> > small condo on the
> > beach.  It is a lot less expensive to live but now I
> > can't believe my
> > eyes are doing this to me after almost 20 years of
> > nothing.  what the
> > Hell.
> > I have been moving from doctor to doctor so fast
> > that I haven't even
> > been able to tell anyone in my family except my mom
> > who has come with
> > me to the doctors so she know about everything.
> >
> > Anyone know the area around the hospital???
> >
> > Help Jane Ann
> >
> >
> > --- In FEVRnet@yahoogroups.com, "whassett"
> > <whassett@> wrote:
> > >
> > >      Anyone who has knowledge of any current
> > studies or reading
> > > concerning FEVR, please pass along any information
> > you might have.
> > > Thank you very much.
> > >
> > >                             Bill Hassett
> > >
> >
> >
> >
>

Dear Jane,

      I cannot tell you how sorry I am to hear what you
are going through.  Ironically, during a visit with
Dr. Trese last month, I showed him a sentence in a
study that said, "Progression of fundus changes and
threat to vision is rare after age 20 years".  I was
merely hoping that at some point in Isabella's life
she would be safe and I could sleep again (she is
seven now and completely without vision in one eye).
Unfortunately, Dr, Trese warned me that generally that
is true but, as you now know, one is not completely
certain of stability at any point in their life with
FEVR.

      We usually stay at an Embassy Suite in Troy which
is about a 10-15 minute drive from Beaumont.  We stay
there because it has two distinct rooms which may
serve your purposes as well.  If that drive is more
than you or your mother are comfortable with, please
give me 24 hours and I will get the name/s of places a
little closer.  Much depends on how long you expect to
be there and how much you want to spend.

      I have followed Dr. Trese's use of Lucentis and
he reported to me that the results have been excellent
but I have no idea if the use would be appropriate in
your case.

      I would much appreciate it if you would e-mail
the studies to me as I, like everyone around this
disease, feel helpless.

      I cannot imagine what your life must be like
right now but I hope you can get the help you need to
halt the current situation with your eyes.

      I will be back to you shortly on the hotels.


                            Bill


--- Jane Young MS <young1@...> wrote:

> Bill,
>
> Hi, Jane (composer of FEVER.net) here,
>
> I visited NIH 2 weeks ago and got some more FEVR
> Genetic papers for
> you if you want.  I can not post them in the files
> yet until I get
> permission from the publishers but I can E-mail them
> to you them to
> you if you want.  Just E-mail me at young1@...
>
> How is your daughter doing.  I posted your message
> about Dr. Trese on
> his link for more information under "Find FEVR
> Docotrs).  I got his
> Office phone numbers and addresses from NIH.
>
> ufortunately I have gone down hill both physically
> and in the past
> few weeks have been going from doctor to doctor and
> then back to my
> doctor at the Retina Group of Washington (Dr.
> Gilbert).
>
> I am now 40 years old, and a few weeks ago, started
> seeing shooting
> stars (little lights moving across my vision)  It
> looks like my FEVR
> has continued to progress.  I had extensive surgery
> to stop the blood
> vessels near the edge of my vision/retina from
> growing and also got
> rid of the membranes that was pulling my retina off
> but the
> detachment and traction eventually ripped my macular
> region. We had
> to laser the rip to stop the fluid from detaching my
> retina.  This
> left me legally blind 20/200 in best eye.
>
> It seems with the new technology of ocular (eye)
> scanning we can see
> the retina and also the thin membranes which have
> very slowly grown
> into the vitreous gel.  The gel normally leaves the
> retina and thus
> it is pulling on the retina.  This has caused
> bleeding and exudation
> between my macular and and my region near my nose
> (nasal region).
>
> NIH was great for getting a 2004 and 2007 picture
> for comparison.
> Dr. Gilbert has been the best.  He works closely
> with Dr. Trese.  He
> saw me for 4 hours and is now creating what seams
> like a PH.D. Theses
> to send to Dr. Trese and then talk with him to see
> what they think
> should be done.  Most probably a Vitrectomie to pull
> all the
> membranes that are stuck in my vitreous and replace
> it with new
> fluid.  He did this for another Post 40 year old
> FEVR patient and it
> cleared up the entire retina.  But I don't know what
> they will want
> to do until they converse.
>
> Long E-mail to get to my question.  Where did you
> stay while your
> daughter was in the william Beaumont Hospital.
> Obviously you had to
> stay around for post operative care and watching.
> How long did you
> stay there.  My mom has always been by my side for
> every operation
> from 2 years old until 21 years (~15 surgeries) but
> she is 81 now and
> still insists on being there by my side.  She still
> gets around fine
> but she is 81 and I wanted to tell her she can't
> keep following me
> forever although she does know my history and is my
> medical advisor
> so I kind of want her there but I don't want her to
> be at a dive and
> If I need to stay around for post operative care do
> you have a
> recommendation for where to stay near the hospital.
>
> I have to say what I would want is a Vitrectomie in
> both eyes but
> emotionally I don't know how I can walk into another
> hospital.  I am
> flipping out.
>
> I was working for the Navy and we were slowly
> getting crunched by the
> war taking personnel and money away from us.  I flew
> with a team to
> Alaska to analyze analyze something broken on a sub
> and worked 9 days
> with very little sleep and also got a flu from the
> sub crew from
> where ever they came from.  I think you can guess
> from where.  I
> developed Fibromyalgia a devastating neurological
> and immune system
> disease which has now cure.  I was up for days at a
> time and also
> under enormous pressure physically and emotionally.
> I was cold,
> cramped and tired.  Just couldn't keep up with the
> Navy Seals on the
> OP.
>
> I have had to request Disability Retirement at the
> peek of my career
> but said what the hell life has never stayed stable
> for me.  I am
> sell my house and was planning to move and rent a
> small condo on the
> beach.  It is a lot less expensive to live but now I
> can't believe my
> eyes are doing this to me after almost 20 years of
> nothing.  what the
> Hell.
> I have been moving from doctor to doctor so fast
> that I haven't even
> been able to tell anyone in my family except my mom
> who has come with
> me to the doctors so she know about everything.
>
> Anyone know the area around the hospital???
>
> Help Jane Ann
>
>
> --- In FEVRnet@yahoogroups.com, "whassett"
> <whassett@...> wrote:
> >
> >      Anyone who has knowledge of any current
> studies or reading
> > concerning FEVR, please pass along any information
> you might have.
> > Thank you very much.
> >
> >                             Bill Hassett
> >
>
>
>

Hi Jane,
It's Christina here and when we go to Dr. Trese in
Royal Oak, we usually stay at the Travelodge on
Woodward in Royal Oak.  It is relatively cheap and
very close to the hospital (within a few miles).  It
runs about 250 a week.  Just a quick question
concerning the shooting stars that you are seeing.  I
too have FEVR (stage 1) and sometimes see what I
thought were floaters in one of my eyes.  Are your
shooting stars similar to those seen as a screensaver
on the computer?
Christina
--- Jane Young MS <young1@...> wrote:

> Bill,
>
> Hi, Jane (composer of FEVER.net) here,
>
> I visited NIH 2 weeks ago and got some more FEVR
> Genetic papers for
> you if you want.  I can not post them in the files
> yet until I get
> permission from the publishers but I can E-mail them
> to you them to
> you if you want.  Just E-mail me at young1@...
>
> How is your daughter doing.  I posted your message
> about Dr. Trese on
> his link for more information under "Find FEVR
> Docotrs).  I got his
> Office phone numbers and addresses from NIH.
>
> ufortunately I have gone down hill both physically
> and in the past
> few weeks have been going from doctor to doctor and
> then back to my
> doctor at the Retina Group of Washington (Dr.
> Gilbert).
>
> I am now 40 years old, and a few weeks ago, started
> seeing shooting
> stars (little lights moving across my vision)  It
> looks like my FEVR
> has continued to progress.  I had extensive surgery
> to stop the blood
> vessels near the edge of my vision/retina from
> growing and also got
> rid of the membranes that was pulling my retina off
> but the
> detachment and traction eventually ripped my macular
> region. We had
> to laser the rip to stop the fluid from detaching my
> retina.  This
> left me legally blind 20/200 in best eye.
>
> It seems with the new technology of ocular (eye)
> scanning we can see
> the retina and also the thin membranes which have
> very slowly grown
> into the vitreous gel.  The gel normally leaves the
> retina and thus
> it is pulling on the retina.  This has caused
> bleeding and exudation
> between my macular and and my region near my nose
> (nasal region).
>
> NIH was great for getting a 2004 and 2007 picture
> for comparison.
> Dr. Gilbert has been the best.  He works closely
> with Dr. Trese.  He
> saw me for 4 hours and is now creating what seams
> like a PH.D. Theses
> to send to Dr. Trese and then talk with him to see
> what they think
> should be done.  Most probably a Vitrectomie to pull
> all the
> membranes that are stuck in my vitreous and replace
> it with new
> fluid.  He did this for another Post 40 year old
> FEVR patient and it
> cleared up the entire retina.  But I don't know what
> they will want
> to do until they converse.
>
> Long E-mail to get to my question.  Where did you
> stay while your
> daughter was in the william Beaumont Hospital.
> Obviously you had to
> stay around for post operative care and watching.
> How long did you
> stay there.  My mom has always been by my side for
> every operation
> from 2 years old until 21 years (~15 surgeries) but
> she is 81 now and
> still insists on being there by my side.  She still
> gets around fine
> but she is 81 and I wanted to tell her she can't
> keep following me
> forever although she does know my history and is my
> medical advisor
> so I kind of want her there but I don't want her to
> be at a dive and
> If I need to stay around for post operative care do
> you have a
> recommendation for where to stay near the hospital.
>
> I have to say what I would want is a Vitrectomie in
> both eyes but
> emotionally I don't know how I can walk into another
> hospital.  I am
> flipping out.
>
> I was working for the Navy and we were slowly
> getting crunched by the
> war taking personnel and money away from us.  I flew
> with a team to
> Alaska to analyze analyze something broken on a sub
> and worked 9 days
> with very little sleep and also got a flu from the
> sub crew from
> where ever they came from.  I think you can guess
> from where.  I
> developed Fibromyalgia a devastating neurological
> and immune system
> disease which has now cure.  I was up for days at a
> time and also
> under enormous pressure physically and emotionally.
> I was cold,
> cramped and tired.  Just couldn't keep up with the
> Navy Seals on the
> OP.
>
> I have had to request Disability Retirement at the
> peek of my career
> but said what the hell life has never stayed stable
> for me.  I am
> sell my house and was planning to move and rent a
> small condo on the
> beach.  It is a lot less expensive to live but now I
> can't believe my
> eyes are doing this to me after almost 20 years of
> nothing.  what the
> Hell.
> I have been moving from doctor to doctor so fast
> that I haven't even
> been able to tell anyone in my family except my mom
> who has come with
> me to the doctors so she know about everything.
>
> Anyone know the area around the hospital???
>
> Help Jane Ann
>
>
> --- In FEVRnet@yahoogroups.com, "whassett"
> <whassett@...> wrote:
> >
> >      Anyone who has knowledge of any current
> studies or reading
> > concerning FEVR, please pass along any information
> you might have.
> > Thank you very much.
> >
> >                             Bill Hassett
> >
>
>
>



      
________________________________________________________________________________\
____
Shape Yahoo! in your own image.  Join our Network Research Panel today!  
http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

Bill,

Hi, Jane (composer of FEVER.net) here,

I visited NIH 2 weeks ago and got some more FEVR Genetic papers for
you if you want.  I can not post them in the files yet until I get
permission from the publishers but I can E-mail them to you them to
you if you want.  Just E-mail me at young1@...

How is your daughter doing.  I posted your message about Dr. Trese on
his link for more information under "Find FEVR Docotrs).  I got his
Office phone numbers and addresses from NIH.

ufortunately I have gone down hill both physically and in the past
few weeks have been going from doctor to doctor and then back to my
doctor at the Retina Group of Washington (Dr. Gilbert).

I am now 40 years old, and a few weeks ago, started seeing shooting
stars (little lights moving across my vision)  It looks like my FEVR
has continued to progress.  I had extensive surgery to stop the blood
vessels near the edge of my vision/retina from growing and also got
rid of the membranes that was pulling my retina off but the
detachment and traction eventually ripped my macular region. We had
to laser the rip to stop the fluid from detaching my retina.  This
left me legally blind 20/200 in best eye.

It seems with the new technology of ocular (eye) scanning we can see
the retina and also the thin membranes which have very slowly grown
into the vitreous gel.  The gel normally leaves the retina and thus
it is pulling on the retina.  This has caused bleeding and exudation
between my macular and and my region near my nose (nasal region).

NIH was great for getting a 2004 and 2007 picture for comparison.
Dr. Gilbert has been the best.  He works closely with Dr. Trese.  He
saw me for 4 hours and is now creating what seams like a PH.D. Theses
to send to Dr. Trese and then talk with him to see what they think
should be done.  Most probably a Vitrectomie to pull all the
membranes that are stuck in my vitreous and replace it with new
fluid.  He did this for another Post 40 year old FEVR patient and it
cleared up the entire retina.  But I don't know what they will want
to do until they converse.

Long E-mail to get to my question.  Where did you stay while your
daughter was in the william Beaumont Hospital.  Obviously you had to
stay around for post operative care and watching.  How long did you
stay there.  My mom has always been by my side for every operation
from 2 years old until 21 years (~15 surgeries) but she is 81 now and
still insists on being there by my side.  She still gets around fine
but she is 81 and I wanted to tell her she can't keep following me
forever although she does know my history and is my medical advisor
so I kind of want her there but I don't want her to be at a dive and
If I need to stay around for post operative care do you have a
recommendation for where to stay near the hospital.

I have to say what I would want is a Vitrectomie in both eyes but
emotionally I don't know how I can walk into another hospital.  I am
flipping out.

I was working for the Navy and we were slowly getting crunched by the
war taking personnel and money away from us.  I flew with a team to
Alaska to analyze analyze something broken on a sub and worked 9 days
with very little sleep and also got a flu from the sub crew from
where ever they came from.  I think you can guess from where.  I
developed Fibromyalgia a devastating neurological and immune system
disease which has now cure.  I was up for days at a time and also
under enormous pressure physically and emotionally.  I was cold,
cramped and tired.  Just couldn't keep up with the Navy Seals on the
OP.

I have had to request Disability Retirement at the peek of my career
but said what the hell life has never stayed stable for me.  I am
sell my house and was planning to move and rent a small condo on the
beach.  It is a lot less expensive to live but now I can't believe my
eyes are doing this to me after almost 20 years of nothing.  what the
Hell.
I have been moving from doctor to doctor so fast that I haven't even
been able to tell anyone in my family except my mom who has come with
me to the doctors so she know about everything.

Anyone know the area around the hospital???

Help Jane Ann


--- In FEVRnet@yahoogroups.com, "whassett" <whassett@...> wrote:
>
>      Anyone who has knowledge of any current studies or reading
> concerning FEVR, please pass along any information you might have.
> Thank you very much.
>
>                             Bill Hassett
>

Hi to all-
It's Christina, mother to Hailey and Hannah who have FEVR and go to
Michigan to see Dr. Trese.  I have a quick question- Does anyone know
of any programs out there that could help with FEVR treatment?  My
girls currently get Medical Assistance through the state of Minnesota
but they don't cover out-of-state services.  We are currently
appealing that decision.  We are wondering if their are any studies or
anything that we could enroll the girls in to help with the medical
bills.  We just went to Michigan in June...thank God nothing had to be
done...and will probably be going back in October.  Even though they
didn't have any surgery, the bill will still be about $8,000.00 for
the two of them because of the EUAs.
thanks,
Christina

I am really new to this my 2 year old daughter just received NEVR as a
provisional diagnosis after the discovery of a retinal detachment. We
still do not know much yet, but I was wanting to know if anyone had any
information on the benefits of early detection. We think our previous
optometrist may have noticed something and failed to inform us about it.

Thank you so such, the NEVR was a typo,  my daughter has a preliminary
diagnosis of FEVR based on apartially detached retina in her right
eye.We do not have a genetic test confirmation yet but should soon.
She saw an opotomologist a year ago who told us she had a lazy in her
left.  The optomologist noted in my daughters chart that she saw a
white spot in the back of her right eye but she just thought that it
was part of the optic nerve and pretty normal.  She did not tell us
this and we only recently found out she had put that in her notes when
my daughter was diagnosed with the partially detached retina.  I am
trying figure out if we had started treatment a year ago would it have
changed her prognosis.  Thanks for the reply.

- Michael

I am really new to this my 2 year old daughter just received NEVR as a
provisional diagnosis after the discovery of a retinal detachment.  We
still do not know much yet, but I was wanting to know if anyone had any
information on the benefits of early detection. We think our previous
optometrist may have noticed something and failed to inform us about it.

Hi Everyone-
Just thought I would post some photos of Hailey and Hannah...my
Minnesota twins...Christina

Dr Carmel Toomes

FEVR Research Team

-----Original Message-----
From: FEVRnet@yahoogroups.com [mailto:FEVRnet@yahoogroups.com] On Behalf Of chrreed
Sent: 10 June 2007 21:19
To: FEVRnet@yahoogroups.com
Subject: [FEVRnet] How Common is FEVR?

Hi to All-

My name is Christina and I am new to this group. My twin daughters
Hailey and Hannah who are 1.5 yr old both have FEVR as well as other
abnormalities. Someone asked me the other day "How common is FEVR?"
I said that it was rare but I don't remember ever reading about any
study to determine how rare it really is. Does anyone out there know
of any studies that have been published as to how often FEVR occurs?

Christina

Hi to All-

My name is Christina and I am new to this group.  My twin daughters
Hailey and Hannah who are 1.5 yr old both have FEVR as well as other
abnormalities.  Someone asked me the other day "How common is FEVR?"
I said that it was rare but I don't remember ever reading about any
study to determine how rare it really is.  Does anyone out there know
of any studies that have been published as to how often FEVR occurs?

Christina

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the FEVRnet
group.

   File        : /Science Articla.pdf
   Uploaded by : young1_fevr <young1@...>
   Description : SCIENCE Article also about  recessive FEVR and bone growth

You can access this file at the URL:
http://groups.yahoo.com/group/FEVRnet/files/Science%20Articla.pdf

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/help/us/groups/files

Regards,

young1_fevr <young1@...>

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the FEVRnet
group.

   File        : /FEVR Article Recessive .pdf
   Uploaded by : young1_fevr <young1@...>
   Description : Medical Article on Recessive Genes Found - Some Causing Low Bone
Density

You can access this file at the URL:
http://groups.yahoo.com/group/FEVRnet/files/FEVR%20Article%20Recessive%20.pdf

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/help/us/groups/files

Regards,

young1_fevr <young1@...>

The current genetic studies are posted on the FEVR web site
http://fevr.net CLINICAL TRIALS.  The NIH study has changed
throughout the years.  You can now join through your doctor.

Also under LINKS there is a link to a full paper on-line for you to
read.

I will post the latest 2 studies if I can find them on my computer,
in the FILES section of this website.  The medical journal publisher
has granted approval for FEVR families to have free access to them.
Usually you would have to pay a lot for them or have access to
medical journals.

The latest information is that FEVR comes in many forms and that
there are many genetic abnormalities that can create FEVR.  NIH is
learning that it is a very complicated disease that in some cases
missing or genetic problems can cause other related growth problems
such as abnormal low bone density.  This has been found in some
recessive genes.  The papers describe this.

Hope this helps.

Jane


--- In FEVRnet@yahoogroups.com, "whassett" <whassett@...> wrote:
>
>      Anyone who has knowledge of any current studies or reading
> concerning FEVR, please pass along any information you might have.
> Thank you very much.
>
>                             Bill Hassett
>

Anyone who has knowledge of any current studies or reading
concerning FEVR, please pass along any information you might have.
Thank you very much.

                             Bill Hassett

The NIH Trial Started 5 years ago has developed and changed.

NEW!

-  Your doctor can now send blood to the National Institutes of
Health for testing of 2 FEVR genes

-  A blood bank to find more FEVR genes and study related eye disease
has been formed.

The Point of Contact to give your doctor is:
(or call for more information)

Dr. Ekaterini T. Tsilou
National Eye Institute (NEI)
National Institutes of Health
Building 10 Room 10N226
10 Center Drive
Bethesda, Maryland 20892
Phone: (301) 496-3577
Fax: (301) 402-1214

E-mail: tsiloue@...

Jane Young MS
FEVR.net Founder

Hello All Old fevr.net message board members,

unfortunately the old message board was taken down by an invasion of a
hacker to spread spam E-mail.

There goes life.

I hope this message board will be more secure with Yahoo behind us.

Please don't forget you can add web links you think the group will be
interested in as well as files, photos, etc.

Only the group will be able to see them.

I hope you all are doing as well as can be expected.

Jane