My ACE Scores Are High. How About Yours?

Dawn DeBois avatar

by Dawn DeBois |

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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.

Dawn with her mom, Faith. (Courtesy of Dawn DeBois)

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.”

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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.

Comments

Bill avatar

Bill

Nicely said Dawn so much I was not aware of. Peace sister....

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Dawn DeBois avatar

Dawn DeBois

Thanks Bill. I'm all about awareness. If I can help one patient have a moment of clarity that helps them, then it will have been a very good day.

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Ls avatar

Ls

All my friends, clients and myself, who have 1 or more autoimmune diseases do have 1 common factor: either our father or grandfather was sprayed with agent orange.

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Dawn DeBois avatar

Dawn DeBois

I’m so sorry that I just now saw your comment. Yes, agent orange has caused a wide range of devastating health effects for far too many people. However, I hadn’t heard the correlation with agent orange
and autoimmune disease such as you describe. Thank you for sharing and my prayers are with you all.

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Lisa Rountree avatar

Lisa Rountree

Great Article, love that last line

Reply
Dawn DeBois avatar

Dawn DeBois

Thank you! I love it, too.

Reply
Jerry Hirsch avatar

Jerry Hirsch

Very informative article. Thanks for writing. I finally got an RX for IVIG treatment... Problem is, I can't find a place to receive it... Furthermore, even though my insurance is a PPO, I think that they have to approve the treatment in advance!

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Dawn DeBois avatar

Dawn DeBois

Thanks for your feedback Jerry! It's a tough time to get started on IVIG right now, unfortunately. And yes, I believe all insurances have to do approvals in advance. Good luck!

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E M avatar

E M

A well-written and informative piece, Dawn. You are a remarkable person to have such a background and still be so positive - thanks for your contributions to the community!

Reply
Dawn DeBois avatar

Dawn DeBois

Thank you! Other's have had an even tougher road to travel! My foster mother that raised me from the age of 5 taught me to give back and to be grateful for what I DO have! Her lessons live on in me.

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Denise Dragoo avatar

Denise Dragoo

I'm HLA-B27 positive. I've been diagnosed with SLE and Mixed Connective Tissue Disorder, both autoimmune diseases. I have also been diagnosed with PTSD, but long after the AI dxs. I'm very positive that my autoimmune reaction and high stress are connected. I would love for someone to study this association; I'd be a very willing participant.

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Dawn DeBois avatar

Dawn DeBois

Denise, I am so sorry to hear of the trauma you also endured. Having the HLA-B27 gene as well makes for the perfect storm. It truly is amazing to learn of similarities between autoimmune patients. I do believe researchers are getting closer to understanding the "on switch" and thus hopefully can learn how to turn the "off" off autoimmune disease. Thank you for offering your own example!

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Gerard Harty avatar

Gerard Harty

Dawn, I wish you the very best in your recovery. Just read a story in today's Sunday Times that once again sheds light on the role of childhood trauma. The last sentence says so much. Here is an excerpt:
As a little boy, he was made to stand in the servants’ quarters on the top floor of the palace. A hunched figure dressed as a witch appeared at the other end of a long, gloomy corridor, advancing slowly towards him, turning away only when he promised his nanny that he would never be naughty again. “I could never see the face; just a witch in black clothes coming to get me,” said Cayetano Martinez de Irujo, 56, Duke of Arjona and Count of Salvatierra, scion of one of Spain’s oldest and richest aristocratic families. “It was terrifying.” So much did the “witch” haunt his adult dreams that, five years ago, the duke, a show jumping champion on the Spanish equestrian team, sought help at a centre for childhood trauma in America. They showed him a video of a gazelle being chased by a cheetah. The gazelle was about to be eaten but managed to escape and then it shook itself, in this way ridding itself of the trauma. But humans don’t do that. They carry their trauma around with them.
Full story: https://www.thetimes.co.uk/edition/world/spains-downton-duke-rocks-the-house-of-alba-with-tales-of-dizzying-excess-6h8zgkvjz

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Dawn DeBois avatar

Dawn DeBois

Gerald, for some reason I missed your comment when you posted it. I do apologize. What you shared is very true about humans carrying their trauma around with them. Thank you so much for your insight and sharing that link!

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Desi Clark avatar

Desi Clark

I was diagnosed with Lupus in 2002, at that time it came across in an annual visit to my doctor. At that time I didn't suffer from any problems or complications but here I am in 2019 and really struggling. My Mom killed my dad and although I was a baby I was there when it happened. she spent sometime in prison and upon her release she never received counseling or treatment and spilled her anger and bitterness throughout my entire life. I only just recently realized my Lupus has to do with my upbringing and I am shocked. I would love some additional information as well as help coping it's all still so very new to me. Any help you can give will really be appreciated. Thank you

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Dawn DeBois avatar

Dawn DeBois

Desi, I'm so sorry that you are struggling and for what you went through as a child. The multitude of recent studies in regards to ACE's affecting a person's health truly help those like you and me who wonder what we did to have our bodies react in the way they are now. The truth of the matter is, we didn't cause this to happen.

My advice: find a therapist that you trust- and that works with your insurance. (Hopefully you have insurance!). Having someone trained to guide you through processing what you experienced as a child allows you to better understand your feelings and "gut responses" to certain triggers in your life. Having a therapist that has experience with patients who are chronically ill is very helpful as well. I wrote 'My Mental Health Safety Net' about my experience with my therapist. I hope you find it helpful.

I do wish you all the very best and hope that your Lupus is able to be brought under control soon.

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