Here we highlight the importance of immunoglobulin therapy to people affected by immunodeficiency 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.
‘I cannot envisage my life without immunoglobulin replacement therapy. The thought of going back to how ill I was terrifies me, says Catarina, who has CVID. ‘It seems like I’ve been immune deficient all my life, with recurring infections (mostly on upper and lower respiratory track). I thought I was just unlucky and got used to living with all the antibiotics and penicillin shots. I also lived in several countries while growing up and that meant my doctors could not connect any of my past conditions. Something I haven’t mentioned before, but I’m sure most patients have been through, is the social stigma of living with an invisible condition. The jokes or nasty comments we have to put up with, either from colleagues, friends or family, as if we constantly need to validate and prove our illness. It’s exhausting and so unfair. When my daughter was born (I was 34) my already week immune system collapsed and I became even more ill. I had so many chest infections in such short time that my daughter (with a few months old) started communicating with me by coughing. She probably thought it was some kind of language as I would cough night and day. I couldn’t even lay down flat to rest or sleep as it would make everything worse, so for months I had to sleep with the bed raised and pillows under my chest to help me breathe. I also ended up in hospital with pneumonia. After so much testing I was finally diagnosed with CVID. As soon as I started on IVIG (every 3 weeks) my life changed. I could not believe what it was like to live without so many infections. It was not an immediate change of to be honest, it took a few months for my body to adapt, but IG treatment makes such a difference in my life. Nowadays I have 1-2 chest infections per year instead of 8-10. The recovery is also quicker. And the difference on the small things: being able to laugh without coughing, or running without coughing. I’ve now been on weekly SCIG for 5 years and it works better for me. My body reacts better to the weekly treatment. It’s hard to adapt and live with a condition like this. Your life changes. Your family dynamic changes. You need to have restrictions to help keep you safe, things that a healthy person doesn’t even think about. I’m now 42 and it’s still difficult to think about the future and make long term plans. But there are worse conditions to live with, so I try not to overthink this. However, I cannot envisage my life without immunoglobulin replacement therapy. The thought of going back to how ill I was terrifies me. The world shortage on IG products is concerning and I would like to think this can be overcome sometime soon.’
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!’
‘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.’
‘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 Immunodeficiency 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 your regular infusions SAFELY this is a very manageable condition.’ ‘I do my own infusions of immunoglobulin at home, and I love it.’