It’s taken me weeks to get around to writing this because of fatigue, which says it all. I am doing this because I have gained a lot from reading other people’s stories, including American patients’ accounts in IG magazine sent by IDFNZ.
I was born seemingly very healthy but developed ENT/milk problems at preschool and was on sulphur drugs in the 50’s after a burst ear abscess. My middle-class background protected me at school as I was not exposed to many sick children.
At 6 the paediatrician investigated me for TB, but luckily it was chronic bronchitis followed by anaemia for years on end with daily iron. T&A operation was performed aged 17. Upper respiratory tract and chest infections continued on lifelong. A nasal cautery was done in my 30’s.
At university, I got viral meningitis but excelled academically and won a PH.D. scholarship, a Fulbright and briefly lectures at university before going to the U.S.A. doing research.
My health made it very difficult and I could not finish my PH.D. and lost my promising career. The lack of sympathy was stunning. In 1991, a cyst was drained with a needle followed by a nasty anaerobic (bacteria) abscess three weeks later. This resulted in years of on and off Mastitis infection (mammary duct ectasia) which has only just stopped.
Simultaneously there have been teeth abscessed, infection under crowns, root canals, urinary infections, a kidney stone with pseudomonas (resistant bacteria) infection, sepsis following a D&C, pleurisy following a knee operation, Epstein Barr, herpes viruses, fibroids, osteoarthritis, small airways disease, cataracts (early), Hashimoto’s thyroiditis with very long courses of antibiotics, for years on end.
I was fortunate to have a good G.P. for 14 years who diagnosed ‘immune disorder’ in 1988 without testing, based on the history. Later under an immunologist (private), I self-referred to in 2008 I got investigated and diagnosed with CVID. IVIG started in 2010. Lately food poisoning (E Coli) hit me. I am now 64 and have been unable to work. The financial, social and familial repercussions have been enormous.