My name is Hannah and I am 22 years old. I was diagnosed with unclassified hypogammaglobulinaemia when I was 17, but I am likely to have suffered since birth. Living with a PID has been difficult at times, but it has made me stronger as a person, more understanding towards others and led me to a potential career path.

Remembering my childhood health

When I was young, I suffered from recurrent ear infections, throat infections (tonsillitis) and sinus problems, and without fail I picked up any and every virus that was going around in school. I have vivid memories of always feeling unwell and tired, even if I didn’t have an active infection, and this affected my mental health. I remember many tearful trips to the doctors, where I would try to explain that I was never feeling right. It took a long time for them to listen, and they eventually ran some extensive tests because they were concerned about the possibility of ME. It was these tests that flagged an abnormality with my immunoglobulin levels which, as standard, are not tested. I remember my GP having no clue about what low IgG and no IgA meant, so I was referred to a haematologist, who then referred me to an immunologist. Looking back, I don’t ever remember feeling scared. I was just happy something had been found that may explain how I had been feeling all these years. Finally, I felt like it wasn’t just in my head.

Making sense of my illness

When I saw the immunologist, everything started to make sense. There was finally a reason for me being tired and ill so frequently. The immunologist performed the vaccine challenge, among other tests, and diagnosed me with unclassified hypogammaglobulinaemia (after telling me I was still a bit of a puzzle as I didn’t quite fit 100% into any one of the diagnoses). I felt so relieved, even though I didn’t have a labelled condition as such. The specialists were going to put me on antibiotic prophylaxis and monitor me long term. They were going to help me.

Going to uni

Soon after my diagnosis I went to study psychology at university. I was incredibly nervous going into my first year. There would be 150 people on my course and I would be living in a flat, in halls, with 11 others. Knowing I would be around so many people so much of the time, I convinced myself I wouldn’t be able to cope and I would get sick all the time. My first year was tougher on me health-wise than for the other students, but I was determined not to miss out on university life and wanted to party like everyone else! For my second and third years, I moved into a shared house with three other students. This arrangement was much better.

Meanwhile, the course became tougher, so I didn’t have as much time to go out. At university, my lectures were videoed and posted online an hour after they finished. This was a massive help for me because it meant I didn’t have to go on campus and sit among the other 150 students if I didn’t want to (especially handy in flu/cold season). If I was unwell, I never missed out on the teaching because I could catch up from home when I was feeling better.

The impact of immunoglobulin therapy

After I graduated from university, my health declined and I had several serious infections. My fatigue was at an all-time low and I was unable to do much besides eat, sleep and shower. It was decided at this point, having been on three different types of antibiotic prophylaxis so far, that it would be best for me to go on immunoglobulin replacement therapy. I was put on Hizentra SubQ, as I was told intravenous delivery would not be an option due to my tiny veins. I was nervous but also excited because I wanted to feel better again. It took me around five months to notice the full effects; the main ones for me being increased energy levels and less brain fog. I have been on subcutaneous immunoglobulin replacement therapy for nine months. In that time I have had only one infection. I have never been so healthy! I still have bad days, where I need to spend a day under my duvet doing very little, but I cannot believe the difference between me now and how I was this time last year. I am so grateful for my bottles of ‘liquid gold’ that keep me functioning!

My future

I am now going on to study a master’s degree in health psychology at King’s College London. During my undergraduate studies, I took a module in health psychology and became particularly interested in the impact of long-term health conditions on mental health and psychoneuroimmunology. I was drawn to this module by my personal experience of living with a long-term condition, as I can definitely recall periods when I’ve struggled mentally. It is something I’m looking forward to studying in greater depth and I think it is one of the best things to come from having been diagnosed with a PID!

My tips

  • PACE YOURSELF. I cannot emphasise this enough. You will learn your limits over time. Personally, if I know I have a big event or day out coming up, I try my best to have a rest day beforehand and to schedule recovery time afterwards, if needed. I know roughly how much I can get done in one day without paying for it the next.
  • Add your emergency information to your phone – all your medications, the contact details for your immunology team, etc. – and let your friends/family know it’s there.
  • Do something enjoyable during your infusions. I treat my infusions as a time to relax and watch TV, apply a face mask and eat some naughty foods. Chocolate is my weakness.
  • Store your infusion supplies in weekly bags. It means you can just grab a bag when that time of the week comes, and it’s handy if you are staying away from home.
  • Be open about your condition. PID is a hidden illness, so it’s important to let friends, peers and your employer know about it so they can better understand and support you.
  • Exercise whenever you can (obviously, not if you are unwell, when rest is recommended). OK, my body isn’t the best at functioning in some ways, but exercising always reminds me that my body can do other things. It is also a great stress-reliever. Even just a walk!

Posted September 2019