People's experience of immunoglobulin therapy

Here we highlight the importance of immunoglobulin therapy to people affected by PID and their experience of having this life-saving treatment.

If you would like to tell us your experience of having this treatment then please get in touch with us.

Michelle and her son Benjy

Michelle and her son Benjy's experience

'Immunoglobulin therapy is a life saver for Benjy. He would have a significantly reduced life expectancy and poor quality of life without it. As it is we use subcut immunoglobulin at home so don't need to rely on or use up hospital time and resources. This is much more convenient for us and Benjy as it is part of our normal family life. Benjy was born with a primary immunodeficiency called X-linked agammaglobulinemia or XLA for short. His mum, Michelle, says 'When Benjy was born he was the most beautiful thing we had ever seen. He was healthy, alert and perfect. Soon after we started immunoglobulin therapy via subcutaneous infusions. Right from birth, Benjy has been very healthy, with no major infections and that's because of his immunoglobulin infusions and we are now old hands at doing them. He has always sat and watched TV and eaten chocolate (!) whilst they are running, currently for 50 minutes every two weeks. He had a bit of a wobble with needles when he was 3-4 years, but we stayed firm and calm, and treated it like anything he doesn't want to do, like brushing his teeth - he may not want to do it, but he just has to! We have explained in basic terms, what his condition is, and he had read some books and information about it, which helps him understand he needs his infusion to "fight the baddie bugs" - the infusion has the "goodie bugs" in and they always win!'

Margaret

Margaret's experience

'I live in Birmingham with my husband and have two grown-up daughters and two grandchildren. I was diagnosed with the primary immunodeficiency Common Variable Immune Deficiency (CVID) 12 years ago and I have opted to have my intravenous immunoglobulin (IVIG) therapy in hospital. I prefer this option because my husband is frequently away on business and I would have to find someone to come and “sit” with me for weekly infusions. This way I feel as though I am leaving my condition in the hospital and walking away for a few weeks! I was a full-time primary teacher until recently, probably the worst career I could have chosen in terms of exposure to germs! I realise now that my battle against ill health went on for decades before the cause was finally found with important symptoms missed. I regularly had five or more prescriptions for antibiotics in a year. But no one questioned the cause. For years I felt that I was letting my work colleagues down by my frequent absences. So it helped me immensely to be finally diagnosed with CVID as a cause for my problems. IVIG therapy was not an instant fix. It took nearly a year before I began to feel so much better, less tired and so much healthier.’

Drew

Drew's experience

'I was diagnosed with the primary immunodeficiency called Common Variable Immune Deficiency (CVID) back in 1996 after becoming critically ill and straight away was put onto immunoglobulin replacement therapy. That defining moment means the world to me when I look back on it, as it has allowed me to live my life, not governed by sickness or being paranoid about public places. Since then, I have been to university lived in two different cities, changed immunoglobulin products more times than I can remember as well as infusion methods leading me to now; doing my own infusions at home via the subcutaneous method, and I love it. I am now a patient representative for PID UK, which I am excited about, as I know the struggles a patient can go through, so by using my experiences and knowledge I want to help patients take control over their condition so they don’t feel limited by it. For example, with a little common sense and being a bit more safety savvy with decisions combined with attending clinic and doing you regular infusions SAFELY this is a very manageable condition.' ‘I do my own infusions of immunoglobulin at home and I love it.’

Andrew’s experience

Andrew’s experience

'I was diagnosed at 18 months old, following repeated illness, with Hypogammaglobulinemia. This was later identified as the primary immunodeficiency X-linked Hyper-IgM syndrome. I genuinely feel that such an early diagnosis and receiving immunoglobulin treatment from such an early age has enabled me to live as normal a life as possible. I started as a baby on daily immunoglobulin injections and over the years these products have improved so I now infuse subcutaneously on a weekly basis.   Having a PID means you will have periods of ill-health, and mine include lung, gut and liver problems, however the immunoglobulin treatment combined with other regular medication help maintain me on a relatively even keel!’