Member Stories

IDFA members share their experience of living with immunodeficiency.

Real people, real stories, in their own words.

Gloria’s Story

Gloria’s Story

Gloria is the mother of 11 year old Sean. Sean is an amazing young man who underwent a stem cell transplant for X-SCID in 2012.

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Lyn’s Story

Lyn’s Story

I was diagnosed with a Primary Immune Deficiency in 2000 following a previously tough year with Pertussis (whooping cough) but my actual diagnosis came in 2019 with Combined Immune Deficiency.

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Oli’s Story

Oli’s Story

As Oli is so sporty, he has struggled to accept his diagnosis and doesn’t want his health to affect his sport. Oli has shared his story in the hope that there may be other young people out there who feel the same.

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Bianca’s family diagnosis

Bianca’s family diagnosis

With two children, both suffering from recurrent infections and various other illnesses, Bianca instinctually knew there was an issue. A referral to an immunologist confirmed her suspicions.

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Jude and IRAK-4 deficiency

Jude and IRAK-4 deficiency

A mother shares her family’s harrowing journey towards her sons diagnosis of IRAK-4 deficiency, a rare form of primary immunodeficiency. This diagnosis was a result of early medical intervention and a team of doctors who understood Jude’s symptoms enough to realise his immune system was compromised.

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Lisa’s journey to motherhood

Lisa’s journey to motherhood

Lisa always knew she wanted to have children but thought it wasn’t possible due to her genetic condition Chronic Granulomatous Disorder (CGD). However, after meeting a well-known CGD specialist from France she was surprised to discover there was a chance it could happen. Lisa had been offered a glimmer of hope.

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Share your story

If you’re an IDFA Member we would love to hear more about your experience with primary or secondary immunodeficiency. By sharing your story you’re empowering others living with a similar diagnosis.

Not sure where to start? Get in touch with us at: info@idfa.org.au