Someone asked me what it meant for Ivy to be immune deficient and I have had a really hard time coming up with a description until someone else from a support group I’ve joined recently did just that…

” The best way I can describe what is going on is this:
 A person with a normal immune system kills germs before they set up 
infection. It’s rare for them to get an infection — but when they
do they call it “being sick.” A person with [immune deficiency]
doesn’t  even know that that germ is in the body until it has set up shop
and multiplied enough to notify the killer-T cells.

Therefore they are “sick” all the time.

Their bodies are fighting germs AFTER they
have set up infections (if they have t-cells in tact).

IgG causes the body to prepare for and prevent infections. With low IgG – there is no
preventive stuff going on. All the body can produce is attack
after the fact. So…. for a person walking around with [immune deficiency], they are
currently fighting what other people would call “sickness” every single day
of their lives.

Their muscles ache, their bones hurt, their eyes
hurt, their tummies hurt, they feel fatigued and crampy and cranky all
the time”.

Dale, mum to Katy, who has chronic variable immune deficiency.

That, to me, is an excellent description of what Ivy goes through and along with the effects of the medication that she takes for the Pemphigus, makes for a pretty grumpy girl, alot of the time. When she is acutely unwell or has an active cycle of blisters everything is a thousand times worse.

There is no going back from this. There will be no amazing change in her health. If she is lucky she will have improved health when she is in her school aged years, as Imogen has but she will still catch everything and take twice as long to get better than the average person.

My heart aches for her every single day.

It is a hard thing for alot of people to understand, I guess. It has taken me a while to get my head around the fact that we are going through this again with Ivy and worse than it was with Immy.

Tonight, she is a little worse for wear again and I am on my guard, just waiting and watching.