Patient Stories

Every PID patient and family has a story


Many PID patients are unwilling to share their story as their disease is usually considered to be "invisible" in that simply by looking at a person with PID you may not see any signs of the disease. We are always adding stories to our site so check back to read more real life stories of PID.

If you are a PID patient or carer and would like to share your story on this site to help other people with PID please contact us at info@auspips.org.au

You can help people living with PID through donating to AusPIPS Inc.

We are dedicated to improving the lives of those living with primary immune deficiency (PID) and their carers:

  • We care
  • We advocate for change
  • We work with other organisations to create the best outcomes for those with PID

Brodie's story

Brodie has a rare Primary Immune Deficiency called Hyper IgM Syndrome. He requires weekly immunoglobulin infusions to help his body fight infections. He will require a Bone Marrow Transplant one day. Brodie lives everyday with PID and needs a Bone Marrow Transplant.

Jackie's story

Jackie was diagnosed with CVID in November 2006. For the preceding 16 years, from her early 20’s in she had been battling viruses and infections which snowballed into recurring infections both with severity and frequency, mainly lung infections until she had no quality of life left – her day consisted of crawling in and out of bed and coughing up pus.

As GP’s are trained to do, her GP kept managing her, for severe asthma with appropriate antibiotics for infections. She was also diagnosed with an autoimmune disease – Hashimotos.

Thankfully he had the hindsight to do pathology to check what bacteria were behind the infections, so he could target the infection with antibiotics that the bacteria were susceptible to. A course of antibiotics would clear up the infection in her lungs and then a week later, she would start to get sick with infection again, which would be followed by a standard course of antibiotic, usually with a repeat over and over, and over again.

In 2006 pathology indicated that she needed IV antibiotics, which resulted in him then referring her to her local hospital, where she was diagnosed over the next few weeks with CVID and bronchiectasis, which resulted from going undiagnosed with CVID for 16 years. In November 2006, she received her first infusion of IvIg (Intravenous Immunoglobulin), then roughly had an infusion every month, while having IV antibiotics until March 2007, when she was granted ongoing supply by the Australian Red Cross Blood Service (ARCBS).  At the same time, Jackie picked up her exercise regime as requested by her physicians, and still swims 1 km weekdays, from which she benefits dramatically, she also nebulises hypertonic saline and does PEP airway clearance with a flutter device.

IVIg combined with twice daily physio regime has dramatically turned Jackie’s life around. She now has quality of life again, was well enough to meet and then marry her now husband. CVID has stolen much from her though – she was unwell from her early 20’s to her late 30’s, which are when people get married and have children – although Jackie is now happily married, sadly she and her husband have lost three babies and they now have a future without children. She also lost her ability to work and have a career, and to save for the future.

Jackie is however most grateful that she lives in Australia, a country that cares for the most vulnerable, with governments who fund hospitals and doctors and treatment and that also fund safety nets for those who are physically unable to work to support themselves. Most of all she is humbly grateful for the blood donors who donate blood and blood plasma product, which help to keep her alive and as well as possible, for who without she would have died long ago and for the Australia state and federal governments who co-fund her infusions. She hopes that she lives a life, most worthy of all that is invested in her.

Please consider donating blood – it really is a lifesaving gift which will help keep Jackie and others in the PID community alive and as well as possible, along with other Australian’s who rely on blood product for staying alive. www.donateblood.com.au 13 14 95

Max's Story

Max was diagnosed with a rare genetic blood and primary immune disorder called Wiskott Aldrich Syndrome (WAS). At 2 and a half years old, Max underwent a Cord Blood transplant to cure his WAS. Unfortunately, as a result of the transplant, Max contracted Graft vs. Host Disease (GVHD) which has left him with many complications. Despite his ongoing health issues he is a bright, witty and happy boy who strives to live life to the fullest.

Mackies Story

Mackie had a battle with Wiskott Aldrich Syndrome (WAS), which is a very rare Primary Immune Deficiency. He also had two battles with leukaemia and two bone marrow transplants, in the end these were too much for him. Up until his last battle, he was training to become a Registered Nurse. The only cure for WAS is a bone marrow transplant. Sadly Mackie lost his battle with WAS on December 27th, 2015 - he turned 21 on November 25th, 2015.

You can help people living with PID through donating to AusPIPS Inc.