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.
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.
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.
Meet Laurie and Beccy, sisters who both live with an immunodeficiency. Laurie has a confirmed diagnosis of Common Variable Immunodeficiency (CVID) while Beccy is still waiting on a definitive diagnosis. Both girls are susceptible to frequent bouts of illness and suffer from fatigue, common among primary immunodeficiency (PID) patients.
So, what does it take to care for children living with a rare disease? It takes a lot of patience, planning as well as love and understanding. In this story their parents offer a carers perspective and share their tips on caring for children with a PID.
Married with three grown children, Sharon was living a full life when a medical event turned her life upside down. Hospitalised and in a life-threatening situation she eventually recovered only to receive a diagnosis of Common Variable Immunodeficiency (CVID). Sharon relies on regular intravenous immunoglobulin therapy (IVIg) to keep infections at bay and delights in being a grandmother.
Born in the United Kingdom Kayleigh was a sickly child and eventually received a diagnosis of Common Variable Immunodeficiency (CVID). During her teenage years she began subcutaneous immunoglobulin therapy (SCIg) to keep continuous infections under control. After being advised her lifestyle would be compromised, she went on to complete her university education, travelled to Australia and started a family. Kayleigh continues to receive SCIg therapy.
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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.
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