We are delighted to collaborate with Dr Maggie Woodhouse OBE, who is widely acknowledged as the leading expert in all matters relating to eye care for folk with Down syndrome.
In conjunction with Maggie, we have created a dedicated Facebook group that we encourage eye care practitioners to join, a closed group where professionals can ask questions and have access to Maggie’s specialist opinion as well as peer support. Maggie has trained ophthalmologists for much of her working life, and we have collaborated to create a national directory of optometrists across the UK who specialise in providing eye care to folk with Down syndrome and/or have been recommended by local families.
If you would like to locate your nearest eye care specialist with an interest/experience in working with folk with Down syndrome, please take a look at DSUK’s map of eye care specialists across the UK. DSUK cannot endorse these, but they come recommended either by Maggie and/or parents.
There is a higher incidence of the condition nystagmus in children and young people with Down syndrome. In 2022 DSUK collaborated with Maggie to publish research around the experiences of parents of children and young people with Down syndrome and nystagmus.
Our report Nystagmus The Parental Experience highlights a lack of specialist knowledge, information, and support available to parents. DSUK has a Facebook group for parents to share experiences, ask for advice and share knowledge, tips, and resources.