7 May 2024
We are highlighting this rare condition as a result of a parent contacting the DSA about her experience of her daughter receiving a diagnosis of Moya Moya disease.
Our Medical Advisers (from the Down Syndrome Medical Interest Group UK and Ireland) write that:
Moya Moya disease is a rare condition in which the blood vessels to the brain become narrowed, limiting the flow of blood to the brain. This can cause strokes (where part of the brain loses it’s blood supply and stops working, causing limb weakness or paralysis, or changes in vision or speech for example) and mini-strokes or TIAs (transient ischaemic attacks, in which part of the brain temporarily stops working, usually for less than 24 hours). Less often, it can cause a form of stroke where there is bleeding into the brain, instead. It can also cause headaches, seizures, abnormal movements, visual problems and developmental delay.
Moya Moya can affect any age, including children. Some forms of Moya Moya are inherited. Moya Moya is more common in people who have Down’s syndrome, but is still very rare.
If Moya Moya disease is suspected, doctors may arrange CT and/or MRI scans and EEG (a recording of the electrical activity in the brain).
Medications may be prescribed to help keep blood vessels open and surgery may be used to remove or re-open affected vessels.’
If you have any concerns about the person you care for, please seek advice from a health professional.