Down’s Syndrome Regression Disorder

Amanda Martin Excerpts

Tuesday 8th July 2025 Westminster Hall

[Amanda Martin (Portsmouth North) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Jeremy. I thank my hon. Friend the Member for Thurrock (Jen Craft) for securing the debate, and for her opening words on Down’s syndrome regression disorder.

As we have heard, Down’s syndrome regression disorder is a little known but deeply distressing condition that affects between 1% and 2% of young people with Down’s syndrome, typically between the ages of 10 and 30. It is sudden and life altering. Young people who have developed essential social, motor and communication skills can rapidly lose those abilities, sometimes in a matter of weeks or even days.

One of the greatest challenges facing families is the lack of awareness. It is often misdiagnosed as early-onset Alzheimer’s, late-onset autism or schizophrenia. Without accurate diagnosis, access to the right treatment is often delayed, leaving families to navigate a terrifying and bewildering situation on their own.

I would like to share the story of one of my constituents, whose son Ewan experienced not just one but two severe episodes of this regression. Each time, his descent was sudden. He became consumed by paranoia, withdrew from his life, took to his bed and suffered significant mental health distress. His personality changed dramatically: once a happy, sociable young man, he became fearful and was convinced that Government agents were following him. His family described feeling shocked, heartbroken and completely unprepared. Despite persistent efforts, they struggled to get timely support. They battled to ensure that they were included in care decisions, and had to fight hard for regular reviews from the specialist.

While Ewan has since made a remarkable recovery—I pay tribute to him, and I am proud to say that he has just celebrated one year of work experience, part time at Lidl—and he is now once again his warm, bubbly self, his family’s ordeal has left a permanent impact. They now view his happiness as their priority, recognising his enduring vulnerability.

Research into DSRD remains limited. Though the condition has been recognised since as far back as 1946, there is still no national diagnostic pathway, no agreed treatment protocol and very little professional training. However, 80% of those who receive appropriate and timely treatment show significant improvement. To get there, we need to raise awareness. We must improve diagnostic clarity and ensure that support services are properly resourced and accessible, and that families are listened to, because they know their young people best.

Today, along with colleagues, I am calling for greater clinical awareness of DSRD across health and social care; the development of UK-wide diagnostic and treatment guidelines; and investment in further research to better understand this condition and its triggers. For the families affected, timely intervention can mean the difference between recovery and long-term suffering. I hope that this debate will be a step towards giving young people like Ewan and their families the understanding, support and hope that they deserve.