My name is Tom, I'm 35 and I have X-linked agammaglobulinemia (XLA) – a condition that makes me prone to infections because my body doesn't produce any antibodies. I need regular immunoglobulin (IG) replacement to strengthen my immune system. I graduated in Psychology from Nottingham Trent University in 2013. 

My challenges and solutions 

My biggest challenge at university was getting effective management for my condition from the GP on campus. It was very tricky to get antibiotics prescribed. On one occasion, suffering with a chest infection, I visited the GP. I was sent away with a leaflet about allergies and in A&E 24 hours later – my chest infection had deteriorated quickly. It's difficult as a teenager/young adult managing your own health for the first time, but I would say: 

  • Make sure you understand your own condition and can articulate the risks to your GP.  
  • Get a letter from your immunology centre that explains your condition.  
  • Challenge your GP if you think they are managing your health incorrectly. 
  • Investigate backup options, such as urgent care centres, just in case.  

University life can mean lots of spur-of-the-moment events and fun stuff, and this made it hard for me to prioritise my regular treatments. I often skipped infusions due to spontaneous events or because I prioritised other things I wanted to do. As an adult, I manage this now by doing larger, less frequent and more flexible infusions. I worked with my team of clinical nurse specialists to increase my dose per infusion by 50% and decrease the frequency to approximately every 10 days (3 infusions per month). In hindsight, I should have discussed with my clinical team the possibility of swapping to an alternative product or dosing schedule that had a lower frequency. I wish I had done this when I was studying as it would have improved my health. So, do plan ahead and talk to your immunology team.  

What worked for me 

Other than routine support for my healthcare, I chose to keep my immunodeficiency private from friends and the university. Receiving my diagnosis as a child, I felt like XLA defined me as a person, and going to uni was an opportunity to be myself outside of my condition. I'm sure there was support available if I wanted it, but I didn't explore those options. I kept it all private. 

I didn't find the secrecy particularly challenging as I saw a specialist immunologist every six months. I would schedule clinic appointments for during the holidays so I could attend more easily and get help from family. There are many more immunology centres now, so if I were a student again, I would consider being referred to a clinic close to the university. 

My tips 

  • Do what is right for you and what you feel comfortable with. If you know you're at more risk but want to do something anyway, then make an informed decision about what is right for you.  
  • Don't feel obliged to tell people about your condition if you don't want to. 
  • Don't be afraid to hold your GP and other primary care providers to account for their decisions about your healthcare. 
  • Consider what challenges you might meet and then promptly alter your routine to overcome them; e.g. adjust your immunoglobulin product or dosage if frequency is an issue. Your immunology team will support you with this.  

Posted September 2025