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
>