What is Peter's anomaly?

Question

I'm just researching on all these eye problems I have...and I can't really simplify up what Peter's anomaly is. All I know is that I was born with it...then it somehow caused aphakia, secondary glaucoma, dense amblyopia, esotropia, hypotropia, foveal hypoplasia, and some corneal decompensation in the next few years.
and..
Now I'm 13 and am just trying to lower my eye pressure. I use Betopic S and Alphagan P, but those have so many side effects. Anyone have any ideas for new meds? [so i can ask dr :)]

Answer 1

I am sorry for you. It looks to be a rare genetic disorder with not many answers, but it does sound like they can do corneal transplants?By the way, you spell extraordinarily well for a 13 yr. old? Those are big words that I would have to look up and I am a nurse...ADDED MORE LINKS AT BOTTOM ...looks like sometimes they do corneal transplants and sometimes do some sort of drainage tube in the eye (but not much success with the drainage tube)

If you are seeing an opthalmologist, I am sure he knows about all the eye drops and treatments to lower the eye pressure, because although he may not see any other patients with Peter's anomaly, he would see a lot of glaucoma patients who also need to get their eye pressure down...

Here are some links that I found on the web. You might want to call NORD at the phone number given or email them at that email address and see if they know anything. It seems to be so rare that it is not even listed on the rare disorders list...maybe you could get them to add it onto their list...

You could also try to contact the Pediatric Keratoplasty Organization at the phone number or email that is listed here (and they are taking a list of doctors involved, so you might want to get your doctor listed here). There are lots of web links listed there.

Then there is the Peter's Anomaly support group. You could try there for info.Hope this helps. Good luck and God Bless..

NORD (National Organization for Rare Disorders)

Peter's Anomaly (2/04)

Note: At this time, there is no report on this topic in NORD's Rare Disease Database. However, if you call the NORD office at [phone], we may be able to send you information (or referrals to other possible sources of information) on this topic through the mail.
http://www.rarediseases.org/search/art_detail?article=1232

Pediatric Keratoplasty Association
a/k/a: PKA

Address:
Dept of Ophthalmology
Westchester Medical Center
Valhalla, NY 10595

Phone: [phone]
Fax: [phone]
800 Number: --
TDD: --
Email Address: [e-mail]

The Pediatric Keratoplasty Association is a voluntary, not-for-profit organization dedicated to the treatment and management of infants and children with corneal diseases. It provides patient and professional education, supports research, promotes support groups and publishes a newsletter. It serves families from the United States and other countries affected by eye diseases such as Peter’s anomaly, sclerocornea, and corneal opacities. With approximately 150 members, the association was established in 1995.

Website: http://www.pedkera.org

http://www.rarediseases.org/nord/search/orgdetail_full.html?org_name=Pediatric%20Keratoplasty%20Association

Peter’s Anomaly Support Group
http://rob66.freeyellow.com/
WWW.PETERSANOMALY.ORG

Here are a few more links

http://rarediseases.info.nih.gov/ (National Institutes of Health ..Office of Rare Disorders)
http://www.eurordis.org/article.php3?id_article=648&var_recherche=peter%27s+anomaly (link list to medical sites for the general public)
http://www.eurordis.org/article.php3?id_article=489 (link list to rare disorders websites)
http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat&Form=Pat&PatId=2590.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20&PHPSESSID=16a9a8daa84e2e82ae8634897a2c1b30 (peter’s anomaly)
http://www.orpha.net/consor/cgi-bin/data.php?ActType=Pat&Form=Pat&PatId=968.0%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20&PHPSESSID=16a9a8daa84e2e82ae8634897a2c1b30 (peter’s plus syndrome)

http://www.orpha.net/consor/cgi-bin/form.php?PHPSESSID=16a9a8daa84e2e82ae8634897a2c1b30&Form=Rcf&PatId=2590.0&PatLbl=Peters+anomaly&FldLoc=&RbtLoc=Cnt&Country=+&Submit=Search&IsSubmitted=yes (list of 4 research projects in foreign countries)

http://www.emedicine.com/oph/topic112.htm (emedicine peter’s anomaly)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed (Lots of articles that mention Peter’s anomaly at PUB MED, plug disease name into search engine)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=PureSearch&db=pubmed&details_term=Peters%20anomaly%5Btw%5D%20OR%20Peter%27s%20anomaly%5Btw%5D (articles at Pub Med)
http://libcat.uchicago.edu/ipac20/ipac.jsp?session=11G0R21578858.10869&profile=ucpublic&uri=full=3100001~!2233229~!2&ri=1&aspect=subtab13&menu=search&source=~!horizon (book? Or article? At Univ of chicago)

Answer 2

I often end up writing the same thing on other sites

Answer 3

I was about to submit this question too this evening

Answer 4

This is the link you need:

www.petersanomaly.org