I was in my early twenties when I suspected I had a primary immunodeficiency
I was working as a teacher and seemed to be visiting the doctor every half-term with a chest infection. I remember saying: ‘I think I have a problem with my immune system.’ I was constantly moving from one infection to another and had a long history of infections. Unfortunately, this wasn’t picked up on and I was sent home with antibiotics.
My journey to diagnosis was long but not as long as others’ journeys
As a child, I was constantly poorly with chest infections, which were all put down to my asthma. I also suffered from recurrent sinus infections. My mum was often questioned about my frequent absences from school and was having to take me to the doctor’s and fight for treatment. I was on and off steroids throughout my childhood.
As I grew up, chest infections were the norm
I thought the infections were part of my asthma. When I was at university, I had a severe chest infection that I couldn’t shift. Again, I was sent away with antibiotics. My mum and dad came to visit and were so concerned that they took me back to the doctor. The doctor sent me straight to hospital and I was treated for pneumonia.
Fast-forward to the start of my teaching career and the familiar pattern of recurring chest infections continued
My chest infections were put down to being in a classroom full of children, and I was told my immunity would build up.
Things took a turn for the worse in 2015, when I was juggling a full-time teaching job and trying to train to be a SENCO as well
I had been unwell with a chest infection for a while and had been assured by a nurse the day before that all was fine. I woke up in the middle of the night with a stabbing pain in my left side. It was excruciating, like someone stabbing me with a knife. My husband rushed me to A&E and I was diagnosed with acute pneumonia. It was a huge shock, and I was admitted to hospital. It was terrifying barely being able to take a breath, and I was so weak when I got home that I didn’t have the energy to walk to the end of my road.
I finally returned to work after multiple phased returns and resumed full-time teaching
At the beginning of 2017, I became unwell again and deteriorated quite quickly. I asked my soon-to-be-husband to take me to A&E and the doctors conducted lots of tests. I was just about to be discharged when a nurse came back with my blood tests and was shocked to see my levels showed extremely high infection markers. She told me she would not have expected to see me looking so well with such high markers! Yet again, I was diagnosed with pneumonia and spent a week in hospital. I left hospital with a PIC line in my arm and remember the nurses promising me it would be removed in time for my wedding in April.
It was then that I came under the care of Dr Shulgina, a lung consultant, to whom I owe everything
She looked at my history and said it was possible that I had a primary immune deficiency. She referred me to Addenbrooke’s Hospital for further tests.
I felt relieved when I got my diagnosis
After years of no explanation for my ill health, I was so happy to finally have an answer. A lot of the time when you are ill, you wonder if it is all in your head. When you are constantly being told there is nothing wrong with you, you start to believe it. I remember crying with relief.
It was really hard for my mum, who had to constantly fight for me when I was younger, deal with dismissive doctors and face criticism for my absences
If we had the diagnosis back then, things would have been a lot different. Seeing her daughter so poorly for so long and battling for answers was extremely upsetting for my mum.
My husband has been so supportive and is so calmly reassuring whenever I get ill
He is a hands-on dad and takes on a lot of the chores at home because my fatigue means I can sometimes get wiped out. To finally have a reason for being so ill is a relief all round.
Life is better now I have started my weekly subcut immunoglobulin infusions at home
I was diagnosed just before I became pregnant with my first child, so I learned to infuse while pregnant. I started the year 2017 with pneumonia and ended it with a baby! The infusions aren’t a miracle cure and I am still prone to infections; I just get fewer infections than I did before. Having a chronic illness can be extremely isolating, so having online support groups is invaluable.
My little boy is nearly three and I love being a mum
I still suffer with fatigue but my family are very supportive and help out with childcare and chores around the home. When Covid-19 hit, I decided to leave teaching as I felt it was too much of a risk for me to continue. I now work part-time on a care farm, supporting young adults with special educational needs. I love my new job and feel like I am making a difference.
My advice to someone at the start of their journey would be, don’t be afraid
There is so much support out there and although primary immune deficiency is classed as a ‘rare’ disease, there are so many people like you willing to talk you through it. Join online Facebook groups, because they are an invaluable source of support. The PID UK website is so informative with lots of great information.
In the future I would like to see more GP training around PIDs, more government support for rare diseases and increased public awareness.
PID UK has been such a great support in helping me understand my condition
They are a fantastic advocate for people with a PID, and knowing I can contact them for support and advice is so helpful.
Posted November 2020