Please welcome our newest member!!

[Guest guest]

Hello Barbara welcome to the BEST SITE ON RP there is a great support group

of not just people but FAMILY.

Love & Prayers Gail McClary

[Guest guest]

We have a new member. Let's all make her feel at home here.

W

>>>>>>>>>>>>>>>>>>>>>>>>

I'm pleased to be able to join this group - had no idea it existed until

today.

My name is Barbara-Rose (Barb) I'm married, no children, live north of

Toronto, Ontario and have had RP for probably 14 yrs at least. Had 2

episodes of nasal RP diagnosed as nose infections then nothing until first

1 then other ear flared up about 4 yrs ago. Unbearably painful and took 6

weeks to diagnose, finally by dermatologist. Since then not too many

problems, but this year my right ear is permanently sore and left one is

joining it, with associated problems of how to sleep etc.

Also had epislceritis, many instances of corneal ulcers, altho thats

subsided in last 2 yrs, plus lots of other stuff.

I've only taken prednisone initially and rely on ibuprofen for treatment.

Joined a circle of friends about 2 yrs ago, most of them with

multi-diseases. Of course I was the only one with RP - left after a while.

Left a message on the Canadian Rare Disease site and 4 ladies contacted

me. Still maintain contact with 2 of them.

Other than that, I monitor myself and keep updated as much as poss. Have

left a message in the guestbook but am willing to help in any way. My

husband has diabetes, we help run our local group, and I help out with a

local blind group. Look forward to hearing from you and let me know if I

can help you guys in any way.

Regards

Barbara-Rose

[Guest guest]

Barb,

Welcome to the group! I read your other post before I read this one! Sometimes

my mail is goofed up!LOL

Good to get to know you and post all you want. We are all here for you!

Lots of Love

Glenda

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[Guest guest]

In a message dated 06/02/2001 4:25:15 PM Central Daylight Time,

susuw@... writes:

<< My name is Barbara-Rose (Barb) >>

Barb, welcome, I'm so glad you found us! Yes, we are incredibly rare,I

prefer to think of myself as " unique " . It's funny, when I was a kid, i was

written up in the Boston medical journals, they should see me now! But I

look at it as we (at least I, and I hope all of you) am still walking,

talking, typing and everything else and plan to keep on doing so for many,

many years to come! That diagnosis is always so scary, there just isn't

enough accurate information out there, Thank God for the foundation which is

trying to get the correct info into doctors' hands! Hang in there, maybe we

won't get any better,but if we can just stop it from getting any worse, we

will have accomplished something! Love, Judy O