Posted by Jeannette on August 04, 2000 at 12:08:40:
My mother is diagnosed with Macular Degeneratin with geographic atrophy drusen. I under a study is under way as of now. I am looking for a description of the Drusen STudy and I am located in ST. Louis, MO. I understand the study is at Washington University here, but cannot find the info I am looking for. Would appreciate your assistance. Thank you. I Do get your newsletter

By Peggy J. Webber on Friday, January 05, 2001 - 08:18 am:

I heard on KMOX that the gene had been identified that causes macular Degenration. they said in the news story that now they can possibly find a cure because they know the gene that causes it. Have you heard anything about this. I would like to see about joining a test group. I am 65 and was diagnosed about a years ago. I have been taking 12 grams of lutien a day and taking billberry capsules. I have not been back yet to see if it is making a difference. those multivitamins that claim they have lutien in them don't even have enough to call a trace. I would have to take 48 of those one a day's a day to equal what I am taking. I take one Ocuvite in the gold box (6 G of lutien) and sundowns Lutien that is 6 grams. I take 4-40mg billbery a day. It cannot do any harm and might help. Maybe slow it down until they find a cure. I live in Centralia Ill p.o. box 36, zip is 62801 names Webber, like to hear from you. or grannyd@midwest.net

By jstevens on Tuesday, May 01, 2001 - 12:03 pm:

I am a 44 year old white female with Drusen of the Optic nerve in both eyes. I have been living with this since I was 17.

I recently had a field vision test as I felt I had lost a lot of my peripheral vision, test results confirmed I had lost a lot of it. I don't do much driving at night anymore as I can't see when its dark. Currently I was told my Drusen is Stage 2. My doctor wants to try a Alphagan 2.5ml, 1 drop once daily for 30 days in one eye to see if that will help as there is not much known about Drusen. You would think after 30 years something more would have been found out.

My question to you is, when Drusen is active, is there anything that I can do to get it back to being inactive? I was wondering if you are doing any studies on Drusen of the Optic Nerve and what it does and its causes? Am I at the early stages of AMD?

I really don't want to go blind or have tunnel vision as I have been told can happen.

Please contact me with any thoughts and advise. Thanks for you time.

Jane

By Marty Westfall on Friday, May 25, 2001 - 11:48 pm:

To "Admin" If the study you are interested in is going on in St. Louis, contact the "Barnes Retina Institute," address East Pavilion, Suite 17413, OneBarnes-Jewish Plaza, St. Louis, MO 63110. Phone 1-314-367-1181.

Good luck. I hope this information helps you.

By Lynette on Friday, February 01, 2002 - 05:06 pm:

The Drusen Study is called CAPT (Complications of Age-related Macular Degeneration Prevential Trial)
If you go to the NIH web site, you can probably find it there. If not, you can call Tammy Osentowski at (248) 551-9866 (I know she works wit the study in Royal Oak Michigan, although there are other national centers I don't know where they are located). Hope this helps.

By Bob Gates on Monday, May 20, 2002 - 04:29 pm:

Hi ; I am newly diagnosed with MD ..I an looking for a support group here in Denver, Colorado..Any help would be great.........Thanks..Bob Gates

By bkerr on Sunday, July 21, 2002 - 09:30 am:

I have been diagnosed with drusen in the left eye. Right now my vision is fine when corrected.

I would like to know if there are other recommended places for diagnosis and treatment that are perhaps as highly recommended or close to it as Johns Hopkins Hospital.

Thanks

Bill Kerr
bkerr20012001@yahoo.com

By dglane on Sunday, August 25, 2002 - 10:59 am:

Hi, My mom is in Indiana. Are there any support groups available for elderly persons with Macular Degeneration available in central or southern Indiana?

Thanks,
Donna

By Solange on Saturday, October 05, 2002 - 09:17 am:

WHO IN NEW YORK CITY OR VICINITY IS CONDUCTING STUDY ON DRUSENS IN BOTH EYES WITH A RIPE CATARACT IN ONE EYE?
MOST CLINICAL STUDIES LISTED ON THE INTERNET ARE NO LONGER VIABLE.
I AM AT A CROSS ROAD: SHOULD I OPERATE THE CATARACT WHILE THERE IS A LARGE DRUSEN RIGHT IN THE FIELD OF VISION ?
Solange

By Bridget Burton on Tuesday, November 19, 2002 - 08:31 pm:

Mother diagnosed with wet macular degeneration. Please recommend medicine, surgery or alternative therapies. Thank you. Bridget

By P. Jensen on Tuesday, December 03, 2002 - 02:12 pm:

I have drusens in my eyes but I still have good vision. I also have a developing cataract. A friend with macular degeneration was told by his doctor said that the removal of a cataract sometimes exacerbates the development of macular degeneration. My doctor said he had never heard that. They both work for the same medical program. What is the latest thinking?

By Martina Weisskopf on Friday, December 13, 2002 - 09:05 am:

My 63 year old mother was diagnosed with wet macular degeneration about 4 years ago. She has recently experienced severe pain in her eye, right underneath the eyelid. The eye is sensitive to touch and bothers her quite a lot. Has anyone else had similar problems and what could be done to ease the pain? Please help me out, if you can.

Thanks so much,

Martina

By Anonymous on Wednesday, September 10, 2003 - 05:31 pm:

Recently diagnosed with AMD, intermediate stage in both eyes. Had angiogram and saw the drusen. ls there anything that can stop this before it gets worse. l also have starting of cataracts. l live in So Calif alone & scared of going blind & not being able to drive or see enough to take care of myself & my little dog is blind with cataracts inoperable. Would appreciate any help.

By Christy on Thursday, September 18, 2003 - 03:16 pm:

Diagnosed with dry macular degeneration 1 1/2
weeks ago. I am 48 years old. I believe it is in
the intermediate stages. I would like to know if there are any clinical trials going on in Minnesota or Wisconsin. Would appreciate any help
or advice. Thanks alot,
Christy

By Blanche Kolojay on Sunday, March 28, 2004 - 09:33 pm:

I am 74 years old. I have been told that I have
macular degeneration, & I am going blind.
I am looking after my husband who has Dementia,
also his cataracts are very bad. He is supposed
to have an operation on the right eye next month.
My fear is if I go blind how can I cope with all
this.
Blanche

By Anonymous on Thursday, April 22, 2004 - 12:22 pm:

To anyone interested in clinical research on Dry AMD, visit: www.amdstudy.com

By Anonymous on Thursday, May 06, 2004 - 10:11 pm:

I am a 52 year male. I was diagnosed with cone rod
distrophy in 1992. At the time my visual acuty was
20/60. Right now it is 20/200. I belive this is
same as dry MD.

Please let me hear from those who might have used
microcurrent stimulator. If it has helped or not.
Also I would like to know if there are any studies
going on in Houston area.

By Anonymous on Tuesday, June 22, 2004 - 05:13 pm:

Is there any progress being made in the PTAMD trials? If so, any idea when this treatment will be available?

By Anonymous on Wednesday, January 19, 2005 - 04:33 pm:

On July 24,2004,I was diagnosed as having dry macular degeneration, My doctor said that it was in the begining stages and he said to take Ocuvite PreserVision, also to use Genteal eye drops. I have been using this every day (4-tablets and drops when needed) for dryness. I was told that there was no cure and that this might help to slow the process. I also have cataracts and my vision seems to be slipping away. On CBS news about a week ago it was mentioned that a lady was taking the Gene Therapy, for macular degeneration research. Does anyone know where to sign up for this program? I am 73 years old and am very fearful of becoming blind.

By sophie cutler on Monday, June 27, 2005 - 10:25 am:

Hi
My daughter was diagnosed with optic nerve drusen and is going back to the hospital for a 2nd scan. I'm worried as I know little about it. My daughter is 12 years old.

By Judy Castillo on Sunday, August 21, 2005 - 12:28 pm:

What is the progress on the Rheopheresis trials? Is this treatment expected to be approved for use in the U.S. as it is in Canada?

By ashok puri on Tuesday, August 22, 2006 - 07:08 pm:

I have been diagnosed with IPT Idiopathic parafoveal tenalgetiasia.

I wuold like to communicate with some going through the same decease.

Also if some one has gone through any treatment and the progress so far ?

ashok puri