Dear Caisa,
I understand very well what you are talking about.

Anyway, I guess nobody without RP can really understand it.
In my opinion those guys can listen to you but I always get the
impression that they do not realize what you are saying.

Hopefully you will get the answers in Lund you would like to receive.
Of course you are so realistic that you do not expect to find a cure.
Please be not disappointed if you notice that it does not fulfill your
expectations.

When I went to the clinical center in Tuebingen, which is the most
well-known and most popular clinic for RP in Germany, with a lot of
questions I must learn that there are so many RP related things which
are still unknown.

So I went beginning of this year to a seminar of our RP society called
"basis knowledge for research". It was hold for 2 complete days by Prof.
Gall from university Hamburg, section genetics, Dr. Dorothee Besch from
university Tuebingen and Helma Gusseck (you know her from the
phone(*smile).

They explained in all details what it really means “to see something”.
How many processes simultaneous running, how many conditions must be
kept and of course what is going on with all these things if you have
RP.
Nobody of the participants ever expected before how complexity and
difficult eyesight really is.

What I am trying to say is that I am not longer be disillusioned of RP.
I much more appreciate the efforts of the scientists and researchers.
Nevertheless I became much more patient in waiting of a cure even if it
is hard because you are going blind meantime.
But I am now informed and aware of it and feel better, although I am not
satisfied with the information I have got.

Maybe these are the things you are also looking for.

I cross my fingers for you and wish good luck in Lund.

Markus



To do anything is better than doing nothing.



Caisa <ramshage@...> schrieb am 07.11.2002, 22:17:04:
> Today brought the postman me a letter I have been waiting for, the
> paper telling me what time and date I am going to Lund to get a
> proper examination of my RP.
>
> In Sweden the healthcare is divided into 20 separate areas depending
> where in the country you live. I live in Stockholm and have asked my
> eyedoctors here to give me a paper that would allow be examined in
> Lund where they are the best in Sweden when it comes to RP. This way
> it would not cost me more than a normal visit to the doctor. But the
> healthcare department in my area has refused since this would cost
> them money and since there is any how no cure for RP anyhow.
>
> So I got tired this autumn and contacted Lund to go there private.
> They accepted this, very friendly, explained to me that this is a
> whole day session, from 8.30 in the morning until 4 á clock in the
> afternoon. Including both examinations and question sessions.
>
> I am quite aware that they will not be able to cure my RP, but I wont
> to know as much as possible about my RP. I have no relatives who has
> RP, and I would like to know what they can say about the prognose, I
> want somebody who can explain how my vision works from a medical
> point of view. Of course there is a major risk that they can not tell
> me anything, but then have I search for the answers as far as I can
> do within Swedens borders.
>
> The time they gave me is friday before Christmas, so now it is
> waiting time.
>
> Sorry for talking so much about me, right now am I little bit upset
> and can't explain why and how, not even to my boyfriend, maybe some
> of you can understand.
> Hugs
> /Caisa
>