Advocating for the routine implementation of SCID (Severe Combined Immunodeficiency) Newborn Screening Australia-wide.
Severe Combined Immunodeficiency (SCID) is a life-threatening genetic condition in which affected babies are unable to fight even simple infections. SCID is often referred to as the ‘bubble boy disease’ highlighting the threat of exposure to germs and is considered an immunological emergency. Without appropriate timely treatment, most children die before the age of 2 years. If diagnosed early and then treated early, SCID can be entirely curable. Early diagnosis is possible with universal SCID newborn screening.
SCID screening costs less than $10 per child. Over half of Australia’s states and territories now have SCID Newborn Screening testing available for families. IDFA is calling for the implementation of routine SCID Newborn Screening in South Australia and Tasmania.
Funding should be made available for the routine inclusion of this lifesaving testing into newborn screening in all states and territories of Australia. The technology is available, and the clinical need is undeniable.
Carer Support – SCID Connect Carer Group
An online community for IDFA members who are carers of a child with SCID.
If are not on Facebook, please email us at firstname.lastname@example.org to be part of the community.
SCID Case Studies
After his first immunisations at 6 weeks of age Antoni became severely unwell experiencing a seizure, and this ultimately lead to his SCID diagnosis. This is Antoni’s story…
Isabelle was 4 months old when she stopped being able to breath properly and started turning purple and in her hands and feet. Later she was diagnosed with ADA-SCID. This is her story…
After months of illness following his birth, Jasper was eventually diagnosed with SCID. This is his story..
Sumali is the mum of Kai. Kai was diagnosed with SCID after abnormalities in his Newborn Screening test. This is their story…