My name is Jenna and I have complement C7 deficiency, which makes me susceptible to some types of bacterial infections.

When I was seven, I contracted meningitis. I then became seriously ill again with different strains of meningitis at ages 12 and 15. I received fantastic care from NHS doctors and nurses and, thankfully, made a full recovery. Doctors, however, decided to investigate further after the third episode.

I was diagnosed with complement deficiency when I was 17, after about a year and a half of investigation. At the time, I was focused on catching up with my GCSEs and starting my A-levels, so the diagnosis didn’t feel like it was the centre of my life. There were lots of blood tests, but one positive to come from these is that I’m not scared of needles! However, I don’t think I really understood what the blood tests might lead to or what doctors were looking for because I’d never heard of primary immune deficiencies. I was a teenager at the time, and I think it was a stressful 18 months for my mum. She was a single parent and didn’t have anyone to share the worry with before I was diagnosed.

I think I had a mixture of emotions following my diagnosis. I was prescribed prophylactic penicillin but, as a teenager, I didn’t want to feel different. At the same time, I didn’t really understand what complement deficiency was and I still worried about whether and when I might get ill again. When I was diagnosed, I was given lots of information about meningitis but there didn’t seem to be any information on complement deficiency that was accessible to patients.

I last became ill at university when I was 19, but I made a full recovery. I had to take time out of university and make special arrangements to catch up with my studies, but I was well supported by the staff. Thankfully, I have remained well since then. I became a teacher and I now work in the charity sector. I am lucky in that my complement deficiency has not impacted on my adult life or my ability to work. However, the COVID-19 pandemic has made me feel more anxious about becoming ill again. Because complement deficiency is rare, I really struggled to find information at the start of the pandemic about the level of risk and whether I needed to shield.

It has been hard to get information from my GPs because they do not always have specialist knowledge. In the past, this put me off asking them questions. I used to have annual appointments at an immunology clinic but was discharged because I have been well for over 10 years now.

I would advise someone at the start of their journey not to worry about asking questions. It’s important to understand your condition properly. Although I’m really grateful for the care I received from the immunology clinic, I found that it was still difficult to get patient-friendly information from them. Now I think I would be less afraid of asking questions.

PID UK, now Immunodeficiency UK, has helped me enormously. I came across their website when I was searching for information at the start of the pandemic. I was so excited when I saw that they had published information about complement deficiency. Finally, I understand what complement deficiency is! Having this information has given me the confidence to ask my GP questions.

I wish GPs had greater awareness of patient-friendly resources, such as those produced by Immunodeficiency UK, so that they could signpost patients to them. However, I was diagnosed before Immunodeficiency UK existed, so hopefully this is already happening.

Posted 6th April 2021