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
> >
>
>
>