My ACE Scores Are High. How About Yours?
The question that invariably follows my definition of Lambert-Eaton myasthenic syndrome (LEMS) is, “Why does someone get an autoimmune disease?”
Most of us know someone with an autoimmune disease, and public figures have helped to bring these invisible illnesses into the spotlight. Actresses Selma Blair and Jameela Jamil have shared their autoimmune battles, instead of hiding their conditions behind Hollywood’s smoke and mirrors. This openness is bringing much-needed awareness and support to everyone who is battling an autoimmune disease.
I delved deeply into research the year I received a LEMS diagnosis, particularly because that same year, I was also diagnosed with psoriatic arthritis, Hashimoto thyroiditis, and ankylosing spondylitis.
I didn’t suddenly develop these four autoimmune diseases, but I finally had a team of specialists who were willing to find out what was causing my relentless pain, weakness, fatigue, and inflammation. I received a diagnosis of LEMS, an ultra-rare disease, and around that time, my doctors began scrutinizing my medical charts and taking me seriously. I was officially classified as having multiple autoimmune syndrome.
While the causes of autoimmune disease are largely unknown, I have found studies that show a correlation between adverse childhood experiences and autoimmune disease in adulthood. The “ACES Too High?” questionnaire was enlightening for me, as my ACE scores were above 4, a high predictor of diagnosed autoimmune disease in adulthood.
Losing the only parent I knew before the age of 5 had an enormous impact on who I have become. Traumatic events that preceded my mother’s death remain in my memory and have had a lasting effect on me as a person, both emotionally and physically.
My mother died when I was just 4 years old. Following her death, I went into a temporary state of “childhood catatonia.” I showed no emotion for months — not happiness, sadness, or anger. A risk factor for catatonia is described in a review published in the journal Acta Psychiatrica Scandinavica as due to a “lack of communication with the mother or substitute mother.” My medical team believes that the loss of my mother was the trigger point for my autoimmune diseases.
As an orphan, I was raised in foster care. My foster care story was not harrowing; I was one of the lucky ones. However, not having a parent who loves and protects you unconditionally from the moment you are born has a lasting effect on you as a person and on how your body responds to stress. My body responded to the “fight or flight” mode by being in a constant state of “fight.”
The presence of the protein HLA-B27 in a blood test can identify someone as having a higher than average risk of developing certain types of autoimmune disease. And, yes, you’ve guessed it, I’m HLA-B27-positive as well. So, I’m a perfect storm, between my early childhood and my genetic makeup.
Some of you with LEMS have had storybook childhoods, while others can relate to some of what I’ve shared here. I know that in conversations I’ve had with my closest friends who have a severe autoimmune disease, many of us have found the commonality of incredibly stressful childhoods. I share my story to give our LEMS community something to think about as we wonder, “Where did this come from?” Those with the tumor-related LEMS know the cause, but those with the non-tumor LEMS are in the category of “cause unknown.”
I’m the type of person who can make peace and make do with something once I understand it. I started my blog, “The Battle Within,” to help others understand autoimmune disease. Though it can seem unfair sometimes that our lives depend on medications around the clock and are dictated by the weather and the timing of treatments, understanding where it all started helps me. I hope that some of what I’ve shared here helps some of you to make peace with the daily struggle. In the words of Billy Joel, “We didn’t start the fire.”
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.