Every PID patient and family has a story…
Many Primary Immune Deficiency (PID) patients are unwilling to share their story as their disease is usually considered to be ‘invisible’. Because you may not see any signs of the disease simply by looking at a person with PID. 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 people similar to yourself, please contact us at firstname.lastname@example.org
Jackie was diagnosed with CVID in November 2006. For the preceding 16 years, from her early 20s, she had been battling viruses and infections which snowballed into recurring infections, both with severity and frequency. Most of these were lung infections which ultimately led her to having no quality of life. Her day consisted of crawling in and out of bed and coughing up pus.
As GPs 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 her GP had the hindsight to run some pathology tests to check what bacteria were behind the infections, so he could target the infection with more effective antibiotics. 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 her GP referring her to the local hospital, where she was diagnosed over the next few weeks with CVID and bronchiectasis, which had resulted from ongoing undiagnosed 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, which benefits her greatly. 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, and was well enough to meet and then marry her now husband. CVID has stolen much from her though — she was unwell from her early 20s to her late 30s, 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.
However, Jackie is most grateful that she lives in Australia, a country that cares for the most vulnerable. She’s particularly grateful for governments who fund hospitals, doctors and treatment, along with 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 and for the Australian state and federal governments that co-fund her infusions. Without donors and funding she would have died long ago. Jackie hopes to live a life, most worthy of all that is invested in her.
In December 2017, Jackie switched from IVIg to SCIg (Subcutaneous Immunoglobulin) and within weeks her quality of life dramatically improved. She is now resolved to ensure that all who qualify for SCIg in Australia, will be able to access this treatment at no cost, as set by the National Blood Authority on 1 March, 2013.
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 Australians who rely on blood products for staying alive. www.donateblood.com.au