Support, guidance and understanding for families and individuals affected by CMV

At CMV Action we understand just how difficult a diagnosis of CMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may face new challenges as a result of the virus.

We also understand the concerns that those who are pregnant or planning a pregnancy, may have about CMV. We know this can be a stressful and delicate time, and offering guidance around CMV prevention and risks can feel daunting.  That’s why we ensure that our team of volunteers have the resources, training, and ongoing support they need to communicate effectively, answer questions, and provide reassurance.

Whichever stage you’re at, our free support services are here to help you.

Talk to us

Our support service is run by a small team of volunteer support advisors, all of whom have lived experience of congenital cytomegalovirus (cCMV).   Our team is here to listen if you need to talk about your experiences and where possible help to signpost you to further information and advice.

Meet our support team

CMV Action has a small team of support volunteers who collectively have been supporting pregnant women and families for over 20 years. They all have relevant experience of cCMV and have been trained to provide support services. Their experience includes professional experience and personal experience such as having a child or grandchild with the virus and baby loss.  Some children born with cCMV will not have any health problems, others will have more serious problems.  Our team of volunteers has been chosen to cover a range of different issues that families may face.

When you contact CMV Action we will pass your details to a volunteer who has the appropriate experience and knowledge to support you.  If your query relates to a medical issue we can also contact our medical advisors to seek advice and support.

Liz Estall

Liz

Support Volunteer

Sarah

Sarah has a son in his 20s who was diagnosed late with the virus and is profoundly deaf. She  attends conferences and meetings with medical advisors to keep her knowledge up to date .

 

“I remember my son’s diagnosis and all the uncertainties and questions we had at medical appointments. Although much has improved since then ,especially in terms of awareness and treatment, many families still have a lot of questions and uncertainties. I hope I can offer some of the answers they need at the time they contact us”

Angela Andrews

Angela

Angela has been involved with CMV Action since 2019, following a diagnosis of primary CMV infection during her fourth pregnancy. Angela's son was born with cCMV and underwent numerous tests, including an MRI and audiology exams. With the support of CMV Action and their medical team, the family navigated this challenging experience. Now a trustee, Angela is committed to offering support to families beginning their own CMV journey.

Awaiting volunteer bio

Amy

Amy first became aware of CMV when she learned that her unborn baby was seriously ill. She discovered CMV Action and called the helpline – the volunteers she spoke with were wonderfully supportive and knowledgeable. Their baby William died a few days later when she was 21 weeks pregnant. She was astounded that a very common virus could have such an impact, especially when there are preventative measures parents can take to protect their babies whilst planning and during pregnancy.

Amy joined CMV Action as a Trustee and Support Volunteer in 2017.  Although she is no longer a Trustee, Amy is committed to continuing her support role with CMV Action.

Additional Support