Many thanks to those of you who returned your application forms to me, the sad thing is that we have gone from 200 on the mailing list to just 32, which saves work for me but sort of limits the support we can offer to others, but I quite understand why those dropped many had much older children in their late teens and early 20s and several other families had lost their children.

The new address list is attached whith contact numbers and also included is some information to help identify families with common problems.

It has been a very quiet time re enquires which is good but we have been discovered by several Irish families who are spreading the word over there so look out for new contacts notifications when they join.

CHIC STUDY UPDATE

Thanks very much for your help so far. The project is just beginning at St Georges hospital. The other 2 hospitals have not been approved yet.

So you can see this is still going on and hopefully will provide some interesting results.

LINKS

As these haven’t been included for a while here is a reminder of some useful links.
Scope; www.scope.org.uk
Family Fund Trust; www.familyfundtrust.org.uk
Cmv and cp noticeboard; http://health.groups.yahoo.com/cmvandcpparentlink
Disability now magazine; www.disabilitynow.org.uk
Disabled living foundation; www.dlf.org.uk
Wheelchair children; www.wheelchairchildren.org.uk
Medicines uk (drug info); www.medicines.org.uk
Ot equipment list; www.otdirect.co.uk/link-equ.html

If any one has useful or just interesting links let me know and I will include them.

CONGENITAL CMV DISEASE: EFFECTS ON VISION

Cytomegalovirus (CMV) is a common virus that infects an average of one out of every one hundred newborn babies, causing a congenital infection that is present at birth. About ten percent of congenitally infected babies will have symptoms at birth (symptomatic) and ninety percent will be "silently" infected, without symptoms (asymptomatic). Children born with either type of congenital CMV infection may have long-term problems, including hearing loss, developmental and motor disabilities, and eye disease. Previous articles for "CMV Updates" have discussed hearing and developmental and motor disabilities, as well as nutritional problems unique to the needs of infants born with
congenital CMV infection. This article will focus on the eye disease that babies born with congenital CMV infection may experience.
Vision loss and other eye diseases are not as common as hearing loss and developmental delays in these children. Eye involvement occurs in only 10 to 20 percent of symptomatic infants and in one to two percent of asymptomatic infants. Children followed in our CMV Longitudinal Study receive periodic vision and eye checks from our team of pediatric ophthalmologists. Preliminary results of our findings have been published (D. Coats, et. al. AAPOS, 4:10-116, 2000), and this article will share some of those findings with you.
Of the 42 children followed with symptomatic congenital CMV infection, nine have had vision loss in both eyes. The cause of the vision loss in these children included retinitis (inflammation on the back of the eye or retina) with macular scars (scars on the vision portion of the back of the eye), cortical vision loss (inability of the brain to decode or interpret vision signs received from the eyes), and optic atrophy (abnormal optic nerve in the back of the eye). Most of the macular scars at the time of birth appeared inactive (no active infection, only eye damage), but one of our children did have severe, progressive retinitis that improved with ganciclovir therapy. Of the almost 100 children with asymptomatic congenital CMV infection followed in our study, only 2 have had small macular scars, and only one of them had subnormal vision (mild).
Infants born with congenital CMV infection also may experience other eye disorders. One disorder is called strabismus (eyes turn in or turn out). Almost one third of our children born with symptomatic congenital CMV infection have had strabismus, but only one percent of our children born with asymptomatic congenital CMV infection had strabismus. An unusual eye disorder, incomplete formation of the eyes, has been seen in congenitally infected infants by other doctors (Pediatrics 66:763-765, 1980 and Am. J. Med. Genetics 28:61-65, 1987). Also, since other groups have rarely observed late onset or late, reactivation of CMV retinitis (Pediatric Infect Dis J 13:1139-1142, 1994), we continue to observe our CMV Study subjects for possible late effects of CMV infection in the eyes.
In summary, all children born with congenital CMV infection should have a comprehensive eye examination in the newborn period. Careful follow-up is recommended for all those who have abnormalities as infants, or at any time a congenitally infected child experiences symptoms of concern, such as inability to move the eyes in all directions, vision loss, eye pain, or other concerns about vision or the eye that may occur. We continue to follow our CMV study subjects with periodic, comprehension eye exams through high school graduation, so we can better understand and document the eye disease in children born with congenital CMV infection, and make recommendations about the need for long-term follow up in these children.

IN BELGIUM
Basic research and human clinical trials continue in the area of CMV vaccines. Recently, in February a workshop on the possibilities involved in producing a vaccine to prevent congenital CMV infection in the near future was held in Belgium. It was attended by experts, from all over the world who are interested in congenital CMV infection and CMV vaccine development. Look to the next issue of "CMV Updates" for an update on progress and potentials for a CMV vaccine! In the meantime, contact your representative in Congress or any-one you know in the vaccine industry, and let them know how important this vaccine can be! We know it is import-ant, because we have been touched personally by CMV, but the people who have the funds and resources to make a successful vaccine happen, also need to know it is important!