My name is Diane, I am 50 and was diagnosed with common variable immune deficiency (CVID) when I was 45. My 19-year-old daughter, Rachel, also has CVID but a slightly different version.

The condition means that I do not have much resistance to respiratory infections, and when I do get a cold or a virus, I cannot shake it off, so it lasts much longer than normal. Also, my airways overreact and I am prone to cough continuously for weeks, day and night.

My journey to diagnosis

I had always been a healthy person who recovered from illnesses quickly until, at the age of 31, while looking after Rachel, who was a baby and very ill in hospital, I caught the same chest infection and did not recover for several weeks.

I put it down to stress and tiredness but every winter after that I continued to catch infections and to cough for weeks, day and night. Rachel continued to be a very unwell child; she was my focus, so I ignored my symptoms and just carried on as best I could. I just thought it was all the worry about Rachel and her illness weakening my resistance.

Even after Rachel’s diagnosis with CVID at the age of seven, it never entered my head that I could have an immunodeficiency too; after all, I had never been ill like this before I had Rachel. I continued to visit my GP and was prescribed antibiotics and asthma medication, but no one suggested I should have tests.

It took me another seven winters of illness and endless antibiotics before I finally thought it might be a good idea to have my immune system checked. I had to go through three consultants at three different hospitals until I was finally diagnosed in 2011, through blood tests at the Royal Free Hospital, which was a great relief. They also found I have mild bronchiectasis (scarring on my lungs) from the repeated infections.

The symptoms that led to my diagnosis

These were having a relative with a PID, contracting repeated respiratory infections (coughs, colds and viruses) and needing repeated use of antibiotics to treat chest infections.

My treatment for CVID

I am doing well on the consultant’s regime of preventative antibiotics and a special inhaler. I get fewer infections and recover quicker, and have avoided the endless coughing, which was the worst symptom for me. My family and I are taking part in the genetic research conducted by the Centre for Immunodeficiency at the Royal Free Hospital, which hopefully will one day find a genetic cause and a cure.

I attend clinic twice a year and leave off medication once the weather improves and there are not so many bugs around, usually around April/May, and start again in September. The support from the hospital is excellent – I can always phone one of the clinical nurses if I have any problems.

How having CVID affects my daily life

I think I am very fortunate in that I work in our family business with my husband. Most of what I do is on a computer and I can work from home. When I was ill I could carry on working, albeit in my pyjamas or with my laptop in bed. If I had had to commute into an office I don’t think I could have kept my job, as I would have had so many absences.

Keeping fit has helped me

I have made a conscious effort to work harder on my fitness and to keep it up through the winter months. Last year I started running and cycling more often and in June I did my first triathlon. This has made a big difference to my health and winter 2012 was the first winter since 1992 that I have not been ill, so I am determined to keep fit, especially as I am now in my fifties.

My top tips

My advice to someone who has just been diagnosed with CVID is to take the best possible care of yourself – eat well, with all the right vitamins and nutrients; get enough sleep (this is crucial, I think, to building up resistance); and find some kind of exercise or sport you like doing that gives you a cardiovascular workout and do it as often as you can during your week.

My wish list for helping people affected by PID

My top three wishes are improved awareness among GPs of PIDs so that we get my second wish, earlier diagnosis, which then would prevent the damage that repeated infections can do. Finally, I hope that some day a genetic therapy will be found to help ameliorate these conditions, and maybe to cure them.