Date:
06/01/2006
Name:
Kelly-Marie Brandreth
Age:
27
Email Address:
kelly.brandreth@haart.co.uk
Mailing Address:
Flat 9a Station Road
Carlton
Nottingham
Nottinghamshire
NG4 3AT
United Kingdom
What Am I Looking For In Others With RP?
I am looking to communicate with other people who are visually impaired anywhere in the world so that we can exchange stories of how we cope
and swap tips etc.
I work as a Secretary within and Estate Agents.
Date:
06/01/2006
Name:
Cathy Looker
Age:
52
Email Addresses:
ukiared@alltel.net, ukiared@yahoo.com , ukia2@hotmail.com
City/Town:
Newark, Ohio
Country:
USA
What Am I Looking For In Others With RP?
I am looking for the same thing in fellow RPers that i seek in everyone, "friendship".
I'm looking forward to hearing from others like myself.
Date:
06/01/2006
Name:
Linda Buescher
Age:
57
Email Address:
TURTLEMOM920@SBCGLOBAL.NET
Phone Number: 616-696-5466
Mailing Address:
13777 Shamrock Ln
Cedar Springs, Mi. 49319
United States
What Am I Looking For In Others With RP?
I have RP/Ushers Syndrome Type II.
I am looking for companionship, feedback, comradery, just friendship too.
I am not working, I am on disability right now.......
How Is My Sight Now?
I have no night vision of course, tunnel vision, don;t know exact figures but close to 10% or less.....perifial is severe......, but my central vision is really good, better without my glasses than with them......for up close work or reading......
What I Know About Treatments:
As for treatment, there is nothing other than Vitamin A, and I was
taking that but chose to stop because of the possible side effects and the questionabity of it really helping.......
Date:
07/01/2006
Name:
James Allen Hall
Age:
41
Email Address:
hall2164@charter.net
Mailing Address:
717 College Avenue
Bristol, TN
United States
What Am I Looking For In Others With RP?
I was diagnosed with Retinitis Pigmentosa 5 and one half years ago.
I am looking to share what I know about the disease and dealing with it on a day to day basis.
I have a lot of trouble with mobility and getting out of my home.
Fear, depression and worry are big problems. I take anti- depressants and anti-anxiety drugs to help with this and I go every 3 months to a counseling center.
How Is My Sight Now?
I have Retinitis Pigmenosa with an average 12 degree visual field.
I currently see my eye doctor in Johnson City TN about every 3 to 6 months.
What I Know About Treatments Or Surgeries:
I recently had laser iridotomy performed on both eyes due to narrow angle glaucoma which is in addition to the RP. I take a multivitamin each day but not above average doses of vitamin A. I see a retina specialist when needed.
Date:
07/01/2006
Name:
Stefania Montagner
Age:
37
Email Address:
Stefania.Montagner@purina.nestle.com
Mailing Address:
piazza M. di Via Fani 15
20099 sesto san giovanni
Milan
Italy
What Am I Looking For In Others With RP?
I have Retinitis Pigmentosa.
I am looking to correspond with others with RP.
Date:
07/01/2006
Name:
Lida Currie
Age:
53
Email Address:
concepts@nbnet.nb.ca
Mailing Address:
PO Box 29094
Moncton, NB
Canada E1G 4R3.
What Am I Looking For In Others With RP?
I have Retinitis Pigmentosa.
I am looking to correspond with others with RP.
My sight is slowly closing in, but, I have to take one day at a time. I have returned back to College, taking Human Resource Management, very interesting and challenging at the same time. I am 53 years old, but, determined to finish.
The last time I was in College was 1980, so that alone is a challenge.
What is going good for me is my life experiences.
Date:
13/01/2006
Name:
Gloria Negroe Ortega
Age:
45
Email Address:
quelitos@hotmail.com
City/Town:
Mor.
Country:
Mexico
What Am I Looking For In Others With RP?
I would love to meet people who have a wonderful quality: Patience.
Date:
13/01/2006
Name:
Tammy Matney
Age:
42
Email Address:
Doodleweed@direcway.com
City/Town:
Panther, WV
Country:
USA
What Am I Looking For In Others With RP?
I'm looking for friendship with others who are blind and helpful advise about daily living and personal adjustment. I would like to know how others cope with low vision/blindness.
Also I'd like to know what products others use to assist them such as PC software, talking products and other things.
Date:
16/01/2006
Name:
Paula Nettles
Age:
40
Email Address:
Pjn0110@aol.com
Mailing Address:
1050 Loop Road
Summit, Mississippi 39666
United States
What Am I Looking For In Others With RP?
I have RP and am looking for others who understand what is to be legally blind but still have a bit of vision.
Date:
21/01/2006
Name:
MaryEllen Marmo
Age:
58
Email Address:
Memteach@aol.com
Mailing Address:
Little Falls
NJ 07424
New Jersey
United States
What Am I Looking For In Others With RP?
I am looking for people with RP to correspond with.
Date:
22/01/2006
Name:
Lindsay Holmes
Age:
14
Email Address: parental_discretion@charter.net
City/Town:
Chester, Illinois
Country:
USA
What Am I Looking For In Others With RP?
Looking for people my age to talk to.
Date:
22/01/2006
Name:
Freeda L. Garrett
Age:
40
Email Address:
freeda_flg@yahoo.com
City/Town:
Algood, Tennessee
Country:
USA
What Am I Looking For In Others With RP?
I am just looking to make friends, give and get support from each other, learn about ways to make my job easier as a teacher of students with special needs, and just discuss the day to day frustrations and challenges of dealing with
RP.
Date:
22/01/2006
PARENT WITH TWO CHILDREN WITH RP
Name:
Neil Schiissler
Age:
41
Email Address:
schiissler@shaw.ca
City/Town:
Calgary, Alberta
Country:
Canada
What Am I Looking For In Others With RP?
- Up to date news / progress on R.P.
- The understanding + opportunities of life with R.P.
- A community chat bulletin board to post question and get feedback from the group.
Date:
25/01/2006
Name:
Alethia Lossing
Age:
56
Email Address:
jimlossing@yahoo.com
Mailing Address:
Alethia Lossing
Apartado 225
Trujillo, Peru
South America
What Am I Looking For In Others With RP?
To correspond with others who understand what it is like to live with low vision, to learn from others, and hopefully I can also encourage and help others.
Date:
27/01/2006
Name:
Jackie
Age:
42
Email Address:
nlitendone@yahoo.com
City/Town:
Washington
Country:
USA
What Am I Looking For In Others With RP?
I have Ushers Syndrome. I was diagnosed at 4 years of age with severe/profound hearing loss and was diagnosed with RP Feb 2004.
At which time I was a Master Nail Tech/Stylist in Texas for the past 20 years. I was told that I had 5% of my vision field left so that ment I was not to drive from that day forward.
I retired from the nail field and decided to relocate and start over. I'm now in Washington State, re-married and own/operate my own hair salon and doing very well.
I'm not hoping for much from others but would like to encourage others to continue to live as normally as possible. I had the opportunity to experience some rather sad and disturbing things at the beginning of my road to RP realization, and would like to share those with others.
Date:
03/02/2006
Name:
Robert Martin
Age:
48
Email Address:
rmmartin2u@aol.com
City/Town:
St.Louis, Missouri
Country:
USA
What Am I Looking For In Others With RP?
I have Usher's Syndrome and I am seeking fellowship.
Date:
04/02/2006
Name:
Rajath
Age:
21
Email Address:
rajath5657@gmail.com
City/Town:
Bangalore
Country:
India
What Am I Looking For In Others With RP?
To share experiences, tips, helping 1 another.
Date:
04/02/2006
Name:
Ruta Piekuviene
Age:
36
Email Address:
piekuviene2@yahoo.com
City/Town:
Vilnius
Country:
Lithuania
What Am I Looking For In Others With RP?
When retinitis pigmentosa was diagnosed me two monthes ago, i felt affraid and alone for some time, but then I decided to look for information and for
friends. I think, we must help to each other to live with our diseases and to change information and to become friends.
Date:
04/02/2006
Name:
Nash Ahmad
Age:
31
Email Address:
Aisha87a@aol.com
Mailing Address:
Hounslow
Middlesex
London
UK
What Am I Looking For In Others With RP?
SEEKING Friends
Date:
04/02/2006
Name:
Micki Longum
Age:
73
Email Address:
micki@online.no
City/Town:
Oslo
Country:
Norway
What Am I Looking For In Others With RP?
Depth communication - art, philosophy, psychology, politics.
Date:
05/02/2006
Name:
Steven Elief
Age:
49
Email Address:
StevenElief@aol.com
Mailing Address:
59 Harrison Road
Edinburgh
U.K.
EH11 1EQ
What Am I Looking For In Others With RP?
Looking for people to correspond with.
Date:
05/02/2006
Name:
Debbie Smith
Age:
44
Email Address:
ismith3@cogeco.ca
Mailing Address:
2 Englewood Court
Fort Erie Ontario
Canada
L2A 5X5
What Am I Looking For In Others With RP?
I hope to have access to new research…meet people with RP …hopefully some that may live close..
See what new gadgets are available.
Validate with others what I'm going through…find support especially during difficult times.
I was just diagnosed 1 yr. ago this month…borderline for driving…stressed with work challenges….etc.
Date:
05/02/2006
Name:
Charles Riggs
Age:
47
Email Address:
csriggs@easystreet.com
City/Town:
Portland, Oregon
Country:
USA
What Am I Looking For In Others With RP?
I want to meet others with RP.
Date:
06/02/2006
Name:
Nan Borton
Age:
65
Email Address:
nborton@shorenet.net
City/Town:
Cambridge, Maryland
Country:
USA
What Am I Looking For In Others With RP?
Info on coping; resources for continuing to work
and be mobile; use and sources of service animals; ways to help others, particularly women diagnosed late in life (I.E., me - no family history, diagnosed at 63!).
.
Date:
06/02/2006
Name:
.Rose Bud
Age:
40
Email Address:
silkredrose_mj@yahoo.com
City/Town:
.Kortirjk
Country:
Belgium
What Am I Looking For In Others With RP?
Just to be connected to some people with the low vision and try to encourage each other..
Date:
06/02/2006
Name:
Terri Faulk
Age:
50
Email Address:
MYSCMONE@aol.com
City/Town:
Covina, Ca
Country:
USA
What Am I Looking For In Others With RP?
Just to share my experience about R. P. Not interested in finding a date.
Date:
07/02/2006
Name:
Kathy Rennekamp
Age:
44
Email Address:
kartsr@charter.net
City/Town:
Florissant, Missouri
Country:
USA
What Am I Looking For In Others With RP?
Looking for friendship and to swap tips and handling life and getting around.
I have Usher's Syndrome and was diagnosed with Congenital Nerve Deafness at 4 years old.
Currently can hear about 85% of words with Hearing Aids. I was diagnosed with Retinitis Pigmentosa when I was 14 years old.
At that time I felt I could see pretty normal, nothing drastic yet. I am now 44 and have tunnel vision of about 10-12%.
I have very little peripheral vision and definitely have night vision for sure. My central vision is pretty good I have reading glasses for reading books, bills and small print. I have discovered a wonderful magnifying glass that helps me with the telephone book and reading books. It's called Magnabrite. It's is the best! I have a 2 1/2 inch magnifier. Check out the website at www.magnabrite.com. Another wonderful website is www.geomart.com.
This magnifier cost me about $19.95 plus shipping for $10.00. It was the best investment I've made. I am now also using a wonderful set of sunglasses that have melanin. Helps bring in the light, cuts the glare and gives you a clear picture without the straining and squinting. I have set of Cocoons glass frames which wrap around and is not bulky. This was not cheap around $300 plus, but definitely a must have.
Date:
08/02/2006
Name:
Isabelle Ruch
Age:
53
Email Address:
isha@mag-net.com
Mailing Address:
10185 Lower mud river rd
Prince George,BC
V2N5C3
Canada
What Am I Looking For In Others With RP?
I'd like to exchange experiences with getting to slow down RP in adults and kids.
Maybe there is something out there to help us
Date:
09/02/2006
Name:
Allan Kittle
Age:
28
Email Address:
bear3t3@yahoo.com
Mailing Address:
204 E. Fairfax Ln.
Winchester, VA
USA
What Am I Looking For In Others With RP?
Looking for people to correspond with.
Date:
13/02/2006
Name:
John Andrews
Age:
62
Email Address:
Geeandjay@our126.freeserve.co.uk
City/Town:
Bedford
Country:
UK
What Am I Looking For In Others With RP?
To chat to and share experiences with anyone of any age world wide.
Date:
28/04/2006
Name:
Christy Aldhous-Evans
Age:
28
Email Address:
bradybunch7122000@yahoo.com
City/Town:
Keystone Heights,Florida
Country:
USA
What Am I Looking For In Others With RP?
I would like to be able to talk to people who are going through the same things I am dealing with.
I would also like to be able to encourage and be encouraged,I think we all need that!!!
Date:
20/8/2006
Name:
Alessandro Iannacone
Age:
44
Email Address:
alessandro.iannacone@pp.inet.fi
City/Town:
Tampere
Country:
Finland
What Am I Looking For In Others With RP?
I am Italian but now I live in Finland.
I suffered of Central serous rethinopathy to both eyes.
I had several recourrences. Now the last one leaved me witth a low
Vision. I'm a scuba diver and i enjot diving and all the physical activities.
The purpouse to join this site is that I would like to get in contact
with people with the same or different eexperiences and to share mine with
others.
Date:
20/08/2006
Name:
Deborah Giftos
Age:
22
Email Address:
deborahgiftos@yahoo.com
City/Town:
Albany, New York
Country:
USA
What Am I Looking For In Others With RP?
I am just looking for friends and other people to talk to..
I have renititis pigmentosa and coats
Date:
20/08/2006
PARENT WITH ONE CHILDREN WITH RP
Name:
Katie Vanderyt
Age:
N/A
Email Address:
bvanderyt@cogeco.ca
City/Town:
Ontario
Country:
Canada
What Am I Looking For In Others With RP?
My 11 year old daughter has been diagnosed with RP. We are slowly dealing with this.
I want to learn more about the disease and talk to other people.
Date:
20/8/2006
Name:
Carolina Salas
Age:
40's
Email Address:
cubscoutdad@verizon.net
City/Town:
Sarasota, Florida
Country:
USA
What Am I Looking For In Others With RP?
I would like to correspond with someone like me and maybe even meet !
Date:
25/08/2006
Name:
Christine Lyons
Age:
50
Email Address:
calyons@optusnet.com.au
City/Town:
Melbourne
Country:
Australia
What Am I Looking For In Others With RP?
I have retinopathy caused from diabetes. I am looking for support and help in how to deal with my worsening eyesight.
NOTE: At this time we are not planning to have a registration form, we don't see the point of make you go through that, we'll add for now anyone who wants to belong to our Web Site.