Today marks the end of day two of world pi week so I thought I’d give you some facts and answer some questions.
There are nearly 400 primary immundeficiencies (PIDs).
They are genetic disorders and are NOT contagious (you cannot catch a PID from a patient whether you hug, kiss or sleep with them)
My particular PID has changed names over the years as science and medicine has evolved, when I was young it was just Hypogammaglobulanaemia, then it was Common Variable Immunodeficiency and then Primary Immune Dysregulatory Disorder and now since my Ataxia Pancytopaenia gene mutation was discovered the doctors don’t seem to know exactly what to call it.
I was lucky to be diagnosed as a baby to avoid some of the non diagnosed illnesses that late-diagnosed patients are affected by.
As the image above shows misdiagnosis and un-diagnosis are still massive issues and un-diagnosis can lead to serious health problems affecting a patients entire life.
PID patients are not currently covered by Medical Exemption so we pay for each of our prescriptions, although most PID patients have a pre-payment card to stop our prescription costs spiralling.
I do my infusions into my stomach (subcutaneously) whilst others do theirs into a vein (intravenously). I did infuse into a vein until I went to University and wanted the freedom to infuse at a time suited to me. During 13 years of infusing subcutaneously I have only had one reaction that caused concern and although it means if I go on a holiday for more than 13 days I have to take my infusion gear with me I do find it a lot easier.
So 8 bottles, 4 syringes, 2 needles keep me healthy(ish) each week and long may it continue!!
How Rare? 