Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...
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Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...
Agnes Nsofwa and her advocacy for sickle cell patients
The Patient Voice Podcast
49 minutes
3 years ago
Agnes Nsofwa and her advocacy for sickle cell patients
After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to. Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and information was needed as much for patients as for their families.
The Patient Voice Podcast
Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to join the campaign to successfully advocate for SCID to be added to Australia’s Newborn Bloodspot Screening Panel.&n...
