Hello! My name is Hannah and I am 33 years old. I have had a current diagnosis of primary immune dysregulation disorder and have been on immunoglobulin since I was two. No one else in my family has a PID.
When trying to explain PID to someone I have just met I use the simplest terms possible, something along the lines of, ‘I have a weak immune system, so can get ill a lot, but to help stop that, I do injections to keep me well’. This is generally a good enough explanation to begin with and then as I get to know the person better I elaborate on this to include more details.
My journey to diagnosis
My symptoms began very soon after birth. Continuous infections, along with low platelet counts, led to my family GP calling social services because they thought my parents were abusing me due to the number of bruises I had. My family doctor was no help whatsoever and thought my mother was just being overly worrisome and seeking attention. I was taken countless times to my GP and the out-of-hours doctors but they did nothing. It was only when Mum saw another GP from our practice during the out-of-hours service that her concerns were taken seriously and she was told to take me to the John Radcliffe Hospital, where an immunologist the GP knew was on call. From then things moved swiftly: I was found to have persistently low immunoglobulin A (IgA), immunoglobulin G (IgG) and platelets.
The diagnosis was a relief
I was first put on immunoglobulin at the age of two, and the number of infections I had reduced. I was then taken off the immunoglobulin aged six to see what happened. When my levels dropped and I suffered from continuous infections a diagnosis of Common Variable Immune Deficiency was made and I was soon back on regular infusions. Being so young, I do not really remember how I felt about the diagnosis but I do remember not enjoying sitting in hospital with a needle in my arm. For my parents a confirmed diagnosis was a relief, although the next task was ensuring I stayed as well as possible.
From the ages of six to eight I suffered infections but was better overall. Unfortunately, at the age of eight, I began to suffer symptoms that led to a diagnosis of inflammatory bowel disease, with uncertain diagnosis of Crohn’s disease or infective colitis. These symptoms continued until I had my large intestine removed at the age of 11. Many of the PID patients I have spoken to suffer from gastrointestinal issues of varying severity.
I found that throughout my diagnosis the doctors at the hospital communicated well with my parents and then myself when I was old enough to understand.
By the time I was 27 my diagnosis had changed to Primary Immune Dysregulation Disorder with the development of ataxia affecting me neurologically.
The symptoms that led to my diagnosis
Lots of infections, bruising, joint pain, sinusitis and digestive problems.
Taking subcutaneous immunoglobulin therapy
I do weekly subcutaneous infusions of Subgam 80ml, which takes an hour. I infuse into my stomach. Up until I was 18 I did my infusions intravenously, preferring to do just one infusion every three weeks. However, once I secured a place at university I switched to subcutaneous infusions due to the fact that I could do them by myself and fit them into my uni schedule, and I have not looked back.
Subcutaneous infusions offer me the flexibility to do them when I feel like it, giving me a much greater freedom than when I was doing them intravenously.
The other benefit I find of infusing subcutaneously is I no longer suffer from peaks and troughs – when my levels drop so low I feel ill. Therefore, I do not often notice much difference between how I feel before and after treatment but I know that if I did not infuse regularly I would feel appalling. Alongside my infusions of Subgam I take various other medications for other diagnoses.
I suffer no side effects from my treatment, aside from the odd headache, but I know if ever I have a problem the nurses and doctors at the John Radcliffe will be there to help me.
How having PID affects my daily life
I try not to let PID affect my everyday life too much. The biggest obstacle I face is fatigue but other than that I am quite lucky in that I get minimal infections so do not have to make too many big adjustments, although I do remember a family trip to Australia being cancelled when I was younger due to my ill health. In fact my Crohn’s disease and Ataxia causes me to make more lifestyle adjustments than my PID.
My employer was brilliant
I finished university eleven years ago and searching for a job was worrisome because I was concerned about how my future employers would react to my health problems. However, my manager at the time was brilliant, reading all the leaflets I gave him and letting me work from home when too tired. Employers since have also been great and I now worry less. The important thing is to be open with your employers because they cannot help you if they do not know what is going on.
Don’t let your diagnosis stop you from enjoying yourself
In terms of hobbies, sports and interests, you may find that having a PID limits you in certain ways. It is different for everyone, but if you cannot do one thing, find another that you love. Do not let your diagnosis stop you from enjoying yourself.
My top tips
- Find a discussion forum for those who are also affected: be it on Facebook, a specialised website or a charity forum. Being able to speak to those who have had their diagnoses for longer will help. Those people are proof that your life does not have to completely change or stop after diagnosis. They can also help answer questions you may have and offer you support and advice.
- Continue to do things that you love – just because you have this diagnosis does not mean that you should stop white water rafting or skydiving.
- Talk to your friends and family – it is important that they understand how you are feeling so they can support you.
- Make friends with the nurses at your treatment centre because they are the ones who you can turn to at any time when you have a problem and they are there to help you.
My wish list for helping people affected by PID
I wish there was a cure. But while the research is being conducted for this I would like continuous improvement in treatment, not just for the immediate symptom of PID (low IgG, IgA and IgM) but also for the other symptoms that so many people have, such as aching joints, headaches during treatment, fatigue and so on.
Posted 29th April 2021
