I was desperate to find a diagnosis for my sons. It took over 18 months for my youngest to be diagnosed and it took years for my oldest to finally get the same diagnosis. There was no foundation established at the time that focused on these little-known, rare diseases as a whole. With our doctors puzzled and their blood tests showing us many different issues–but leading us in no certain direction, I knew there needed to be a leader to guide parents like myself.
What exactly is CAID and what is an autoinflammatory disease?
This is a legitimate question since most are familiar with autoimmune diseases, but haven’t heard much about childhood auto inflammatory conditions. Now, autoimmune diseases causes attacks on healthy cells in your body by mistake. We know their are over 80 types of autoimmune diseases. And we know that the classic sign of autoimmune disease is inflammation and the main goal in treatment is to reduce that inflammation.
So, where does an autoinflammatory disease fit in here? Both groups of diseases share characteristics including the main inflammation. Autoinflammatory diseases arise from disorders within the innate immune system. We have the adaptive immune system which selectively targets and fights infectious agents using antibodies. Then we have the innate (inborn) immune system which fights anything in the body that it recognizes as foreign or non-self with a general and immediate response. Autoimmune and inflammatory both involve the adaptive immune system. The hallmark for innate immunity is inflammation. AutoInflammatory diseases are characterized by intense inflammation that can show up as a rash, fever, in the joints as well as organs.
When we finally had a diagnosis of a Atypical Blau for my son Brody, he was already taking an stronger than adult, off-label prescription that was not yet approved for his diseases. I watched helplessly as he writhed in pain and wondered if there were other mothers like me out there, alone and wondering if they were making the right choices for their sick children.
Knowing at that point he had no known prognosis, understanding how long it took for him to be diagnosed, I had no choice but to create stopCAIDnow, so one can say it was started out of desperation. CAID stands for Childhood AutoInflammatory Diseases, at the point of diagnosis I didn’t care what you called the diseases, I just wanted to focus on the mechanism of the “bad” inflammation. Knowing if we could shut off the “bad” inflammation in Brody’s disease, then I could also help my oldest son who has a connective tissue disorder, EDS, mitochondrial findings as well as help many others suffering with a CAID.
I can speak as a mom of two watching my two sons battle their diseases with such strength but definitely without ease. I can say watching Brody be pinned down getting injections, having surgery at 7 months, being turned away from doctors because they don’t have the answer, holding him days in and all night screaming from excruciating pain, watching him gets infusions twice a month and for the last two years which he now has been flushing his own IV, knowing that the mask he wears to protect him has become so normal to him that he says, “I smile with my eyes,” having to buy Aidan a walker, carrying him around the house because his legs are in such pain, having to go to 6 appointments a week, watching the boys watch others play free…
Maybe it hasn’t all been ideal, but I know we are blessed for the moments we are not in the middle of the crisis.
I carry the families of CAID in my heart daily. The struggles of their children in pain, needing wheelchairs, feeling alone, getting injections–and all being done without a proper diagnosis, yet knowing it falls under the CAID umbrella. The flares, the inconsistency, the living in and out of hospitals, not knowing when the next time you’ll be able to slow down again…We aim for balance, both physically and emotionally. Being able to empathize, support and provide resources makes my world feel purposeful.
Balance is making sure that, for us, that we keep happiness within the realm of our odyssey. With the painful meltdowns that can last for hours, caring for our children, understanding them, while at the same time raising them to be strong adults and to know that part of their lives will be “pay to play”–watching with joy as the play, and knowing with a heavy heart that they’ll pay in physical pain later on.
Their diseases may be invisible to the naked eye, but there is nothing invisible about our children’s pain to us.
Rare means not as well know, rare doesn’t mean not real.
Learn more about our fight at www.stopcaidnow.org