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Children with Familial exudative vitreoretinopathy

Dear All

I am currently in a study of the recessive form of Familial exudative vitreoretinopathy, FEVR at the NIH National Eye Institute. Most of the time FEVR is a dominant desease but sometimes it can be recessive or X-linked. The researchers there are looking for other famlies who may have the recessive form of FEVR to do a genetic study of their family. If any one knows of any one with possible recessive form of this disease please pass on that NIH would be very interested in talking to them. They can call or e-mail the POC below or e-mail me at

Everything is free and the study would help find the bad gene that causes FEVR (non-dominant)
The more people we can get the better chance of tracking down the gene.

Please pass on to anyone.

Jane Ann Young
Rockville, MD 20852

NIH POC for FEVR Study
Ekaterini Tsilou, MD
Ophthalmic Genetics and Visual Function Branch,
National Eye Institute, National Institutes of Health,
10 Center Drive, MSC-1860
Bldg 10, Rm 10 N226,
Bethesda, MD 20892-1860
tel: (301) 402-2391
fax: (301) 402-1214


Meira Rina Meltzer, MA, MS
Genetic Counselor
National Eye Institute
Ophthalmologic Genetics and Visual Functions Branch
voice: 301-402-4175
fax: 301-402-1214

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Re:Children with Familial exudative vitreoretinopathy

Hello. I have an 8 year old daughter who was diagnosed with FEVR at 2 years old...she had been seeing an opthamologist from the time she was 5 months old because she was thought to have a condition called a colomboma of the optic nerve, and Duane's Syndrome. However, at 2 years old we moved to a different city and started seeing a new opthamologist who did her examination on her and immediately sent us to Dr. Michael Trese at Beaumont hospital in Royal Oak Michigan. For anyone out there looking for an amazing doctor who has treated this condition very successfully you should look him up (He's wonderful!!) Anyway, noone in either my husband's family or my own has any sort of eye conditions what-so-ever...we think perhaps she might have a recessive form of the condition. She does consult with a geneticist....we are uncertain why she has developed this condition. She did have a laser surgery on both of her eyes when she was two years old, fortunately her condition has been stable since that time. She continues to have her condition monitored by both her retinal specialist and her opthamologist. If you recieve funding for this study we may be interested in hearing the details and what is required as we would certainly like to participate. Thank you.

Re:Children with Familial exudative vitreoretinopathy

My daughter has been diagnosed today. As the disease does not run in either of our families we suspect the recessive form, we are waiting for an appointment with a genetics consultant. Her ophthalmogist examined my eyes today and they were found to be perfect, no sign of the disease.
We live in Ireland. I am German and my husband is Irish. My daughter is just 2 years old. Initially we were told there was one fold on one of her eyes. About a year later another fold and scarring was noticed on her other eye. A fluorescin Angiogram and an Eye Exam under general anaesthetic were done 2 weeks ago, also an MRI (normal). The fluorescin Angiogram came out as just one blurry green picture, less clear than the Eye Exam photos. The Eye exam showed folds and scarring on both eyes, the folds covering the macula in both eyes. We were told she needs a laser treatment as soon as possible to 'create a barrier' to prevent the retina from detaching, they expect to be able to do this within the next 2 weeks, but want to get another opinion on this, as the hospital we're attending seems to only have had one other case of FEVR before.
We'd be happy to take part in a study.
We'd also love to hear from other parents or patients, especially with children where the damage occured this early.

Re:Children with Familial exudative vitreoretinopathy


There I know of a couple of families in the UK who have children w/FEVR. Manda, who posted below yours, along with another family. There is a yahoo group where a few of us (including these families) meet. Please feel free to join.


Re:Children with Familial exudative vitreoretinopathy

I am based in the uk and have a 5 year old daughter with this disease. i cant find any english people on the web sites with this . I would really love to talk to other parents.

Re:Children with Familial exudative vitreoretinopathy

my cousin is
> > 4yrs old.she has been diagnosed with this a year
> > ago.both of her eyes are affected
here is a brief medical report of he


Reg : Ms. Dhara Sai Srikari, MR.No.P253886

Ms. Srikari, 2 year old child was first examined at our institute on 20th
April, 2002. Parents noticed that the child is working at closer distance
since two years. There was no history of parental consanguity. Her mother
had poor vision in one eye. The grand mother was diabetic.

On examination here, the Teller visual acuity (TAC) was 20/360 with 80%
reliability in right eye. The child did not fixate with the left eye and
resisted occlusion of right eye. The refraction showed ?5.50 D sph /
-2.00 D cyl x 180° in right eye and ?7.00 D sph in left eye. External
examination showed 40° left exotropia. There was atrophic holes. Anterior
segment examination was normal and lens was clear. Since she was not
cooperative, she underwent examination under anaesthesia on 9th May, 2002
by Paediatric Ophthalmologist. At that time she was seen to have a myopic
tesselated fundus in both eyes. Left eye was seen to have a large
fibrovascular traction membrane in temporal periphery with avascular retina
temporally. The right eye had avascular retinal periphery. Based on this,
she was diagnosed to have familial exudative vitreo retinopathy with stage
4 in left eye and stage 1 in right eye. She underwent laser treatment to
the left eye on 3rd August, 2002 by me under anaesthesia. On detailed
examination at this visit by me, the right eye was seen to have multiple
areas of early fibrovascular proliferation temporally. The child was
advised to undergo prophylactic scleral buckling and retinal ablation to
right eye also.

However, when she was examined in next month under anaesthesia, the left
eye had developed a shallow rhegmatogenous retinal detachment in addition
to the tractional component. Hence she was advised to undergo vitreo
retinal surgery for left eye. Scleral buckling, silicone oil injection and
perfluro carbon liquid with endolaser was done on 7th September, 2002.
However, intraoperatively, it was seen that there was extensive
fibrovascular proliferation which could not be removed completely. On
periodical evaluation, the retina was seen to be only partially attached,
Silicone oil was removed under general anaesthesia in left eye on 8th
January, 2003 as it had got emulsified since the left eye was amblyopic and
did not develop fixation during the follow up, we did not suggest any
further surgery for left eye. However, for right eye she was advised for
prophylactic scleral buckling, laser and cryoablation which was done on
22nd February, 2003. Following this the vision was recorded as 20/100.
The refraction was ?7.50 D sph / -1.50 D cyl x 180° in the right eye.
Anterior segment examination of the right eye was normal and left eye had
aphakia. There were few emulsified silicone oil bubbles in left eye.
Fundus examination showed retina was well attached with good buckling
effect and regressed vascular proliferation in the periphery of right eye.
The right eye appears to be stable now but due to known progressive nature
of familial exudative vitreo retinopathy (FEVR) she needs periodical
evaluation in right eye. The left eye is becoming phthisical. Cosmetic
treatment would be suggested for left eye later but at present she was
advised to use NSAID eye drops for any severe pain and redness of the left
eye. Briefly, Ms. Srikari has high myopia with familial exudative vitreo
retinopathy which is too advanced to benefit from vitreo retinal surgery in
left eye and right eye has done well with surgery. She was advised to
continue treatment and was advised periodical follow up.
hope this would be of some help for u

Venkat Ramana Acholi
219,Sir Fred Schonell Drive
St Lucia - 4067

plz mail me.
hoping to hear from u


Venkat Ramana Acholi
219, Sir Fred Schonell Drive
St Lucia -4067
Phone:mob 61423256101
land line:61738701816

Re:Children with Familial exudative vitreoretinopathy

hi jane my little boy is 6 and he was diagnozed at 5 wks with fever could u let me know if there is a cure and also as much info that u know about if there will be a cure in the forseeable future, I don't know if my little boys is recessive or any of the others but fever is present in the back of his fathers eyes but only mildly and its present in his grandfathers dna.thanks manda

Re:Children with Familial exudative vitreoretinopathy

Hello to both of you. I am sorry to here about your children.

One correction needs to be made in the original message. NIH is not currently conducting a study but rather we are submitting for a study of the recessive form of FEVR.

The more people we can find with the recessive form of FEVR the better the ods that NIH can get funding for a full study.

I have recently built a new website for FEVR.
It can be found at

As soon as I figure out how to install the message board I bought there will be a board dedicated to FEVR.

I offer up a thank you to the American Foundation for the Blind for hosting this message board and helping reach for a cure for FEVR.

You can now reach me at the e-mail address

Jane Young

Re:Children with Familial exudative vitreoretinopathy

Dear Ann,

We are from Malaysia. We have a boy, Ian Chan who was born on 15 Mar 2002, 2.4Kg, gestational 38 weeks. Ian was diagnosed to have total retinal detachment on his right eye and partial detachment on his left eye. At first, the opthamologist believed it is Retinopathy of Prematurity (RoP) but another opthamologist believed it should FEVR because there Ian was not born premature and not below 1.5Kg, furthermore, he has never under the incubator. However, both myself and my wife were examined and dis find any clear retinal problem with us. And none of our family members (from both sides) have any eye desease.

I can provide you with the medical report with better description is you need.

I can be contacted by e-mail : or contact no. +60-12-3939978.

THank you

Waihong Chan

Re:Children with Familial exudative vitreoretinopathy

My son is 4 1/2 yrs old and has Familial Exudative Vitreoretinopathy. They say it is heredity, but we cannot find anyone in either of our families who had it. Any information on the subject is most welcome. My son was born 6 weeks premature with a weight of 5pounds.

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