Rheumatoid Arthritis and Adverse Childhood Events

It’s Friday November 21st and I won’t be writing a post today as I’m having an exacerbation of fatigue. Very possibly because I got into “project mode” culling and organizing a few thousand digital photos last week. I can now finally find things with more ease. It was so satisfying that I just. couldn’t. stop. In the meantime, I’ve gotten some great help from Write Now Design and the footnotes seem to be working right and the comments have been made more accessible. You can use any name you’d like and your email will not be made public. Please share any questions, insights or musings you might have. I love hearing your thoughts!  I hope to be back in a couple weeks and until then, I wish you a wonderful Thanksgiving holiday – whether you will be feasting on the full table or doing necessary self care along with me on some other kind of more limited eating plan!

My paternal grandfather developed rheumatoid arthritis as an adult. He lost his mother to suicide when he was only 6 years old and it appears from family lore that he was the one who discovered her (see more in last week’s post).

Learning about my grandfather’s exposure to such a tragedy adds to the questions I hold about whether early life events influence risk for chronic illness. Here’s some of the research I’ve been finding on the subject.

Environmental Factors

Rheumatoid arthritis (RA), increasingly referred to as rheumatoid disease (RD) (1)I’m using the term rheumatoid arthritis in today’s post title because it is the most recognized term. I am using the term rheumatoid disease everywhere else in this post because it is a systemic disease that affects more than the joints [see more on the RA Warrior blog here, here and Kelly’s summary in pdf here], is not a purely genetic disease. In fact, non-genetic factors account for at least 50% of the risk (2)Edwards, C.J. and C. Cooper, Early environmental factors and rheumatoid arthritis. Clin Exp Immunol, 2006. 143(1): p. 1-5. [full article]; Read more on the blog RA Warrior.

For the most part, studies have focused on factors such as socioeconomics, infections, vitamin D and smoking when looking for potential environmental risk factors (my grandfather was a smoker). Some researchers, however, are beginning to look at the role of events occurring in early life. This is due to the fact that RD can occur in young children, which suggests early influences (3)Edwards, 2006. [full article], (4)Edwards, C.J., Can the Events of Early Life Influence the Development of Rheumatoid Arthritis? J Rheumatol, 2010. 37(1): p. 1-2. [full article]. It is also because antibodies associated with RD have been shown to arise as early as 22 years before the onset of symptoms (5)Majka, D.S. and V.M. Holers, Can we accurately predict the development of rheumatoid arthritis in the preclinical phase? Arthritis Rheum, 2003. 48(10): p. 2701-5. [Abstract], even though they do not show up in everyone with the disease (6)Edwards, 2006. [full article]; author is citing references 22,23.

Adverse Childhood Events

 

genogram showing grandfather and his mother's suicide

A genogram representing the suicide of my grandfather’s mother, when he was 6 years old.

There is a growing body of research showing that traumatic events and household dysfunction in childhood increase risk for chronic illness. A well-known group of studies refer to such events as “adverse childhood experiences (ACEs)” (see the ACE website; take their 10 question survey here). Since the first study in 1998 (7)Felitti, V.J., et al., Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. Am J Prev Med, 1998. 14(4): p. 245-58. [full article], which had a 70% response rate to the 13,000 questionnaires mailed out, findings have been consistent.

ACEs are associated with a higher risk of mental illness such as depression and anxiety; behavioral addictions such as substance abuse; and chronic physical illnesses such as autoimmune diseases, type 2 diabetes, obesity, cancer and heart disease. See a list of their publications up to 2010 here .

Trauma in Early Life and Risk for RD

the heads of three thistles with the glow of autumn grasses in the background

For my grandfather, the loss of a parent would have certainly qualified as an adverse childhood event (ACE).

Early loss of a parent, often by suicide, was a finding associated with RD in a study exploring dreams in women with the disease (8)Levitan, H.L., Patterns of hostility revealed in the fantasies and dreams of women with rheumatoid arthritis. Psychother Psychosom, 1981. 35(1): p. 34-43. [Abstract]. What a remarkable, and specific, finding.

An ACE study looking at risk of autoimmune disease found that individuals exposed to 2 or more ACEs had more than twice the hospitalizations for rheumatic disease than those with none. They also found that for every additional ACE the risk of developing a rheumatic disease increased by 30% (9)Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71: 243-250. p. 247. [full article].

Another study looked at the role of traumatic events in risk for RD and found no differences in rates of exposure compared to healthy controls. They found, however, that a higher risk for RD was associated with the way a person was able to process the event: individuals who developed RD were slower to adapt to adverse life events (10)Carette, S., et al., The role of life events and childhood experiences in the development of rheumatoid arthritis. J Rheumatol, 2000. 27(9): p. 2123-30. [Abstract]. To me this suggests that the events were experienced as traumatic by these individuals, that there was an inability to resolve these experiences, and that PTSD may have been the result.

The Data Locked up in Our Stories

A ring of soft purple flowers emerging on the head of a thistle

Learning about my grandfather’s life, I see that he would have experienced additional traumatic events in childhood related to his mother’s suicide. His mother was likely distressed for some time before her death. She could have had PTSD or severe depression, for example. Stress “is a big suppressor of maternal behavior” (described in this article on epigenetics in Discover) and makes it difficult for a woman to attach and connect with her children in a nurturing way (11)Hurley, D. (2013). Grandma’s experiences leave a mark on your genes: Your ancestors’ lousy childhoods or excellent adventures might change your personality, bequeathing anxiety or resilience by altering the epigenetic expressions of genes in the brain. Discover. May. Citing researcher Champagne on p.3. My grandfather would likely have also suffered interruptions in connection when his father experienced the loss of his wife. The quality of attachment between parent and child has similar effects to childhood trauma in that it is also associated with risk for chronic illness in adults (12)Puig, J., et al., Predicting Adult Physical Illness From Infant Attachment: A Prospective Longitudinal Study. Health Psychol, 2012 [Abstract].

Studies have found that when a person loses a parent in childhood there is a greater risk of developing PTSD (13)Koenen, K.C., et al., Early childhood factors associated with the development of post-traumatic stress disorder: results from a longitudinal birth cohort. Psychol Med, 2007. 37(2): p. 181-92. [Abstract]. Children of adults with PTSD, which could have been the case in my grandfather’s life, are also at greater risk of developing PTSD themselves even if they are not exposed to more traumatic events than their peers whose parents do not have PTSD (14)Yehuda, R., et al., Vulnerability to posttraumatic stress disorder in adult offspring of Holocaust survivors. Am J Psychiatry, 1998. 155(9): p. 1163-71. [Abstract] and (15)Yehuda, R., et al., Relationship between posttraumatic stress disorder characteristics of Holocaust survivors and their adult offspring. Am J Psychiatry, 1998. 155(6): p. 841-3. [Abstract].

One of the recurring findings in the ACE studies is that risk for diseases in adulthood increases with every additional ACE. In other words, experiences of adverse childhood events tend to be additive and compounding (more in this post) (16)Felitti, 1998..

I wonder whether my grandfather’s RD was a form of Post Traumatic Stress Disorder: a disease that evolved through similar mechanisms but with a different expression. Studies support what many people with chronic illnesses have long suspected, which is that experiences of childhood adversity are an important component in the development of risk for disease, including RD.

Epigenetics and RD

Slide showing a double helix with methyl groups attached

As described in an introductory post here, epigenetic changes result from interactions with environmental factors such as toxins and infections, diet and medications. They also occur as a result of exposure to trauma and stress (17)Francis, R.C., Epigenetics: how environment shapes our genes. 2012, New York: W. W. Norton & Company. 256.. Epigenetic changes are being increasingly identified in RD (18)Javierre, B.M., H. Hernando, and E. Ballestar, Environmental triggers and epigenetic deregulation in autoimmune disease. Discov Med, 2011. 12(67): p. 535-45. [Abstract], (19)Pieringer, H. and A. Studnicka-Benke, What is causing my arthritis, doctor? A glimpse beyond the usual suspects in the pathogenesis of rheumatoid arthritis. QJM, 2013. 106(3): p. 219-28. [full article], (20)Klein, K., C. Ospelt, and S. Gay, Epigenetic contributions in the development of rheumatoid arthritis. Arthritis Res Ther, 2012. 14(6): p. 227. [full article], (21)Ballestar, E., Epigenetic alterations in autoimmune rheumatic diseases. Nat Rev Rheumatol, 2011. 7(5): p. 263-71. [Abstract].

The relevance of epigenetics is that it helps us to understand important and viable mechanisms for how life events can influence our risk for chronic illness. The inspiration that comes from the field is that these changes can be reversible (22)Francis, Epigenetics (2012).. Methylation changes are seen in veterans with PTSD and have been found to decrease after successful treatment and resolution of PTSD (23)Yehuda, R., et al., Lower Methylation of Glucocorticoid Receptor Gene Promoter 1 in Peripheral Blood of Veterans with Posttraumatic Stress Disorder. Biol Psychiatry, 2014. [Abstract] . This raises the question of whether chronic illnesses, including RD, might be reversible too.

The existence of antibodies prior to onset of RD is evidence of a latency period (24)Kim, J. M. and M. H. Weisman (2000). “When does rheumatoid arthritis begin and why do we need to know?” Arthritis Rheum 43(3): 473-484. [read the Abstract, which links to the full article] , which I describe in The Chronic Illness Model. It suggests that the disease occurs as a result of a lengthy process that evolves over many years. As few as 5% of people with antibodies for RD may go on to develop the disease (25)Kim, (2000), [citing Aho 1985] and for some, the antibodies revert to negative (26)Aho, K., et al. (1985). “Rheumatoid factor seroconversions in relation to clinical rheumatoid arthritis.” Ann Clin Res 17(1): 15-18. [Abstract]. In other words, even people who are at risk for this disease may recover, never progress, or fail to ever develop it. This too reflects the beauty of what we are learning about environmental risk factors and epigenetics: more support for the possibility of reversibility.

RD Recovery Stories

bee on a thistle in bloom

Since writing this post I’ve wanted to modify this section (done in italics) to more clearly reflect the tender care with which I want to explore whether it might be possible to recover from a chronic illness. In my own experience, I often appreciate hearing that others have recovered from CFS. I find that it gives me hope and conveys the possibility that my disease may not be as solid or as set in stone as it feels. But when I hear about these stories I often have other feelings as well. Feelings of annoyance, for example, that despite trying many, many things for over 15 years, including ones that have worked for others, I am still sick. Frustration that, like so many others who are also still sick, I’ve been working on my health full-time and there is clearly no obvious cure, nor an approach that works for everyone. Hearing of recovery also sometimes evokes a sense of failure, discouragement and even self-judgment that I must not be doing enough or trying hard enough…

So, in the process of hearing other people’s stories and looking to learn from those who are improving or who have recovered, I do not want to assume that the process is obvious, nor certain; nor that recovery is clear, or easy. I do not want to add to the voices that blame or assume that those of us who are still sick aren’t doing it right, or doing enough.

Ultimately, even though I have yet to recover from my own chronic illness, I remain curious about what is possible. Is there a better way to understand factors that might influence our health? Are there different ways or additional tools we can use to increase our chances of doing better, or even slowing things down? Here are a few stories I’ve found that may help us feel hope, or to feel a sense of possibility, or to keep journeying with new or different questions.

I have found stories of a small number of people who have recovered from RD. In addition to epigenetic studies and findings that antibodies do not always progress to RD, stories of recovery give the rest of us hope. I suspect that many more people have recovered than we know about because they had no one to tell their stories to.

Two people recovered from RD with anti-inflammatory diets. One is journalist Susannah Meadows’ young son, whose journey is described in a New York Times article called The Boy with the Thorn in his Joints.

The second journey of recovery from RD is Katrina’s. Katrina followed the Gut and Psychology Syndrome (GAPS) diet for 5 years and describes how she had to go very very slowly. In her letter to Dr. Natascha Campbell-McBride, the neurologist and neurosurgeon who developed the diet to treat her son’s autism (he recovered too), Katrina explains that even the deformities in her joints resolved with time.

A 3rd person who recovered was a woman who attended one of my talks on the role of trauma in chronic illness. She said that she had worked intensively with anger and recovered after being able to work through her feelings. She too, had RD (and not the less debilitating and more common illness called osteoarthritis).

When looking at risk factors for chronic illness, detailed case studies are a valuable and underestimated tool. The role of stress and trauma begins to take shape when we look for details, and stories help us see the complexity – and subtlety – of many of our life experiences. These experiences may be stressful or resourcing, and may be linked to the evolution of a disease or the successful resolution of a disease before it ever arises. Given what we are learning about epigenetics, working with early trauma and attachment relationships may be a useful tool for working with chronic illness. Diet and other approaches may become better understood as key tools as well.

Have you ever felt that events in your childhood played a role in your health? Do you have any supportive resources that could be helpful to share with the rest of us? Do you have a story – whether it involves childhood events, or events that have occurred in your family, or an experience of recovery? Or any other story? Have you found tools supporting recovery or remission, or that you feel may have helped the process of your disease to slow down? How can we help each other along this journey and what insights, tips, support do you have to share?

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