Improving the lives of people with

Primary Immune Deficiency

How Will PID Affect My Life?

How PID will impact on your life is very difficult to assess at the time of your diagnosis. This is because there are, at the time of writing, over 300 different types of PID and each one of these will have different outcomes. Common Variable Immune Deficiencies (CVID) are the largest group of PID’s but even CVID is a collection of several different diseases. As genetic diagnosis of PID improves, Immunologists will be better able to tell you not only what your diagnosis is, but the probable impact it will have on your life. However, at present not many genetic causes of PIDs have been discovered. 

In many cases, how PID impacts on your life will depend on how soon you were diagnosed after you started to become ill. If you were lucky and you were diagnosed quickly after you started developing frequent repeat infections, there is a good chance that, with an appropriate treatment plan, your life will be minimally affected by your PID. However, many people are not diagnosed until after they have developed irreversible organ damage, such as bronchiectasis or gut problems. Once repeated infections have caused scarring of organs, the potential for infection to take a hold remains high, even with a good treatment plan.  PID affects people in ways varying from minimal to disabling. Some people only notice their PID when they have their treatment, others are too unwell to be able to work and others vary from day to day on how they are affected.  Some people have crashing exhaustion, some don’t. Some have auto-immune type problems such as reactive arthritis, irritable bowel syndrome, skin problems while others have none of these problems. However, whatever way that your PID affects you, the UKPIPS community members will support you as you learn how best to live with it on a day to day basis.

You will have to take medication on a regular basis for the rest of your life, but many people can still attend school, go to work, have children and enjoy their retirement. PID will continue to impact on your life, but you will gradually learn how to manage it and how to enjoy life on the good days, look after yourself on the bad days and, most importantly, meet people on-line who can share and understand both the bad and the good times. It is amazing that despite the difficulties living with a PID can bring, most of us have times when we are able to laugh about it all.