Friday, December 23, 2011

Introduction to Living with Primary Immune Deficiency


Primary Immune Deficiency (hereafter referred to as "PID"), is a little known and under recognized chronic medical condition  that can go undiagnosed, or wrongly diagnosed for years, even decades.  I wasn't diagnosed with it until my late 40's/early 50's.  I had been told for many years that I had other conditions instead.  Fortunately they are now starting to test newborns for this disease as medical professionals are becoming more aware of it.
Most people, unfortunately, are not diagnosed with this until they reach their later years, unless they're very, very ill and are hospitalized frequently.  Most of us who have it have struggled through life, dragging ourselves to work, wondering why we get sick so easily, and so often.  We encounter problems at work due to missed days, we feel awful so our productivity can suffer and we go along the whole time with this nagging feeling that something isn't quite right, even though our doctors say there's nothing they can really pinpoint.  Since the symptoms can be so varied and so differing in intensity, it is easy for an untrained doctor to misdiagnose someone with something else.  Many have been diagnosed with chronic fatigue, chronic sinus problems or recurring bronchitis.  In reality, these are all part of the medical condition called Primary Immune Deficiency.  To make diagnosis even more complicated, there's more than one type of Primary Immune Deficiency, and to the extent that you have it, decides whether you'll receive treatment for it (of course, the insurance companies can play a role in the decision also, as treatment is very expensive).  A very good website for information is:  www.primaryimmune.org.
What I'd like to do as time goes on is relay to you my experience with being ill for so many, many years, how I was finally diagnosed, and how the treatment I have had to be on has not been without its difficulties.

No comments: