IDFA members share their experience of living with immunodeficiency.
Real people, real stories, in their own words.
Laurie & Beccy
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.
As a baby, Tyson’s ongoing infections were beginning to worry his family. After several hospital admissions they insisted on further testing which resulted in the diagnosis of X-linked Chronic Granulomatous Disease, a rare genetic disease. Upon further consultation a bone marrow transplant (BMT) was recommended; Tyson’s younger brother was a suitable match and the family went ahead with procedure. It was a harrowing journey with a successful outcome.
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: email@example.com