Down Syndrome Regression Disorder

Rare and under-researched condition

Sudden loss of previously acquired skills

BETTER RESEARCH AND AWARENESS OF Down Syndrome Regression DISORDER (DSRD)

  • Increased research funding for DSRD.

  • Increased funding for awareness in first instance in teachers, who will often be the first people to see a change in acquired skills and this will be very sudden.

  • Medical schools and professionals to listen to parents of victims of DSRD.

  • Raise awareness of teachers, GPs, Consultants, Paediatricians, Accident and Emergency nurses and Neurologists across the United Kingdom and NHS.

  • For every GP surgery in the UK to offer training about DSRD and to recognise the 8 core features which occur suddenly.
     
  • Raise awareness to parents and caregivers of Down Syndrome Regression (to recognise symptoms and features which happen suddenly. To question GPs, Accident and Emergency, Consultants and paediatricians - to prevent a misdiagnosis).

  • Adhere to ’The Down Syndrome Act 2022’ to have an issued guidance to public bodies (NHS, social care and education) on the steps that is appropriate for them to take to meet the needs of individuals with Down’s Syndrome. With due regard this guidance should include the awareness and to make provision for treatment of Down Syndrome Regression Disorder.


Background from Petition by Parent of Sufferer (in their case aged 16 years)


"The sum total of all those symptoms is that your child is gone."


Down Syndrome Regression Disorder has eight core features, each of which devastate the abilities of those affected:


  • Altered mental status or behavioural dysregulation
  • Cognitive decline
  • Social withdrawal
  • Focal neurological issues
  • Sleep problems/chronic insomnia
  • Language deficits
  • Psychiatric Symptoms
  • Movement disorder


What is DSRD?


This disorder causes individuals with Down Syndrome to suddenly lose previously acquired skills such as communication, movement, social interactions, and other daily living activities. The symptoms are sudden and progressive, leaving families totally unprepared and devastated.

Potential causes are under researched.


Sadly, due to lack of awareness and understanding, patients are frequently misdiagnosed with early-onset Alzheimer’s disease, late-onset autism or psychiatric disorders. 


LACK OF RESEARCH IN UK


The UK currently has no active research for this disorder despite first recognising it over 70 years ago.


Down Syndrome is the most common chromosome abnormality in the world and does not discriminate. DSRD can affect any race, men and women, nationality and economic status. Yet no active research in the UK is ongoing!


The UK needs to act in line with the United States where active research, trials and treatments are ongoing and seeing success rates. The demand for awareness is paramount to give the affected person with Down’s syndrome their light back and their chance and opportunity of a quality of life.


Parents of victim saw multiple GPs and had multiple Accident and Emergency visits expressing parents' concerns and through parent's own research even suggesting DSRD as a cause, to be met with profound disdain by medical professionals who just said similar to: "I’ve never heard of it"


The lack of awareness in the early stages, can result in a huge differential outcome.