Persistent hyperplastic primary vitreous treatment

[fariborz]

Hi.

I am a 23 year old boy who is suffering from congenital persistent hyperplastic primary vitreous disease and my vision acuity is about 8%. I know that currently a clinical trial is in progress for embryonic stem cells retinal transplant in US and UK. Do you believe that this technique can help improve in conditions like mine? Can I be hopeful that this technique may jelp me in future?

Any fast reply is highly appreciated.

[flossy93]

The email address is on the website link I provided in the prior message to you.  If you copy and paste the website address that starts with 'http' into the address bar of your search engine, it should bring up the page for the pediatric ophthalmology clinic, including the live email link you can click on to send an email.  

The address on that web page is the same email address I tried to paste in the message.  I didn't know the MedHelp.org website does not allow users  to post email addresses in their messages.

Here is the email address with the "at" symbol and the 'dots' removed:

childeyes[AT]hadassah[DOT]org[DOT]il

If you replace the [AT] with the 'at' symbol, and the [DOT] with 'periods', you should have an email address for the clinic.  

If all else fails, just use Google to search for "Pediatric Ophthalmology - Hadassah Medical Center" and that search should return a link that will take you to the same page with the email link for their department.  I hope this helps!

[Keddie57]

Thanks so much for this information!  There wasn't an e- mail at bottom of page so if you could be so kind as to copy and post, I would be very great ful .  Starting to work on this less. Will let you know what I find out.  Thanks again !

[flossy93]

Keddie57,

I could not find a published article so far about any such recent PHPV research/treatment in Israel online.   As a lay person I don't have access to some of the publication databases, so it could be out there and I just can't access it.

However, I did find a website for the Hadassah Medical Center in Jerusalem mentioning their pediatric ophthalmology department.  It notes that one area of their practice is "Diagnosis and Treatment of Congenital Ocular Malformations - PHPV"

Here is a link to the webpage where I found this listing:

http://www.hadassah-med.com/medical-care/departments/ophthalmology/pediatric-ophthalmology.aspx

There is an email address at the bottom of this page where you or your daughter in law could write to inquire about any current treatment or research study regarding PHPV:  ***@****  

At a minimum they will hopefully respond to an email requesting information about the PHPV research and treatment about which your daughter in law is interested.  Good luck!

[Keddie57]

Hi, I had heard about some research going on in Israel where a 30 minute procedure provided black and white vision.  I have been unsuccessful in finding out any information on the topic.  My daughter-in-laws aunt had sent her an article about the research but have not been successful in tracking the article.  Are you aware of any such thing?  Keddie57

[flossy93]

I found a good description online of the types of eye problems and associated visual impairments related to PHPV, at a French vision institute website:

http://www.institut-vision.org/index.php?option=com_content&view=article&id=220&Itemid=75&lang=en

Apparently the disorder can cause problems in the anterior (front) or the posterior (rear) of the eye, or a combination of both.  The posterior form is the one which involves problems in the retina which is at the rear of the eye.

It's clearly a very difficult disorder to treat and any treatment will depend on the location of the physical problem in the eye, and which structures are involved.  Treatment appears to be targeted toward saving whatever vision is present at the time of diagnosis (usually in infancy).

In terms of stem cell research, it's a promising area but I haven't read about any specific use of stem cell therapies in human retina patients with retina disorders as yet.  For anyone who wants to read about the clinical trials for the use of stem cells in human patients with either dry AMD or Stargardt's macular dystrophy (12 patients each), here is the link:

http://www.stemcell.ucla.edu/news/ucla-researchers-begin-first-stem-cell-trials-treat-eye-diseases

This area of research is in its infancy for eye diseases, but it's wonderful that researchers are beginning to explore the use of stem cells to help the visually impaired.  I hope the research will lead to useful therapies someday soon.

[Keddie57]

From Keddie 57
My Grandson is now 16 months of age, Seems to be following normal growth and development.  Feel he may have some vision, even if it is only light.  Walks with hands out In front of him or walks with head on floor like a vacuum cleaner feeling with head, the gets up and walks around room. Is teething and has had tubes put in ears to prevent decrease in his hearing, now starting to repeat words.  Has been having problems with febrile seizures ? due to teething.  Has anyone heard any more on Stem cell research for the persistent hyperplastic primary vitreous disease?

[asia016]

hi, may i know what's the medicine drops or drugs for persistent hyperplastic primary vitreous?

[fariborz]

Hi.

This is a very old post. Your grandson has born in the age of advanced technologies when bio-technology is growing fast. I have born in  earlier of 1989. Drs always said and saying no change was and is seen in my retina. However since I was 20 I felt my vision has lowered. 2 years ago my Dr. said it is due to growth of cataract and removed it. My far vision improved but after 1 and half a year I felt my vision acuity is again lowered and since a few months ago I felt my vision has lowered again. Everytime I go to my Dr he says there was no change in your retina and it unlikely to see any change in retina in my age. He always says everything is OK. But I don't think so.

I am yet able to walk, use my computer (with a 17" LCD and magnifier software) However previously I could LCD better.

Al my hope is embryonic stem cells helo me one day. Here in my country Drs don't follow daily changing technological world.

[Keddie57]

How much can you see with 8%.  Are you able to get around on your own.  Did you ever have surgery on your eyes?  I have a grandson who is 3 months old that has been diagnosed with the same.  He has had one surgery at 6 weeks of age - 5 1/2 hour surgery where they removed the excess tissue, tacked back the retina (had to trim retina ='s periferal vision gone).  Now has blood clot in front of retina, so not sure if it has taken.  Dr. says that is normal and will wait another month to let it disslove.  If not, must go in and remove.  They say he may be able to see large objects, but not sure, must wait and see what he tells us he can see.  We live in prayer.  Once this eye is healed, they may go in and do the same with the other eye and open the light pathways to the brain for future research outcomes.  My Grandson has it in both eyes.  

[fariborz]

Hi.

I have already searched but there is only a little information about it on the web. Not detailed info is available as it is a very rare disease and not well known. Meanwhile, wen I was 6 months old, a doctor had said that I am suffering from low amount of pigment cells.

Many Thanks.

[John C Hagan III, MD, FACS, FAAO]

Type the full name in a internet chuck engine and read about it.
JCH MD

[fariborz]

Hi.

Which part of retina is related to PHPV? What is there causing low vision?

[John C Hagan III, MD, FACS, FAAO]

PHPV  persistent hyplastic primary vitreous
RPE  retinal pigmented epithelium

Not at all related

JCH MD

[fariborz]

Hi.

Is PHPV related to RPE as well ?

[John C Hagan III, MD, FACS, FAAO]

This is a generalization. It is very unlikely to be helpful to you and your most important thing is to protect your good eye from injury, disease or poor health habits. No way to predict the progress of technology that will help you. Not likely in the next 5 years.
JCH  MD