Today is the 4th day of World PI Week and it has been a little stressful.
Although I gave up work at the end of March I always said I would do the facebook for PID UK and unfortunately some patients took against one of the pictures provided by World PI Week.
The picture was of a patients personal quote about how much their life had improved on Immunoglobulin Therapy. Whilst I do not refute that many patients lives are not perfect health wise once they have started treatment I do not accept that no ones life is even slightly better on Ig replacement therapy once they have been diagnosed.
For a recap I have
Primary Immunodeficiency
Crohns Disease
Psoriasis
Arthritis
An exceedingly rare form of ataxia
Myelodysplasia Syndrome
and yet even with these conditions I feel lucky 90% of the time.
If I had been diagnosed with several of these disorders even 80 years ago I would probably be dead.
I could of caught several severe infections that could of killed me or bled to death from my Crohns.
Luckily I have an incredible team of doctors around me wonderful family headed up by my mum, dad and sister and amazing friends.
In my 31 years I have been taken off my infusions several times to see if my immunedeficiency had sorted itself out. Each of those times I was so ill and ended up in hospital and would have died had I not restarted treatment.
So no Ig treatment may not turn your life around if you are a PID patient but it definitely makes it better than if you weren’t to have it.
How Rare? 