When I was 17, I became really ill.
A handful of specialists left my hospital bed scratching their heads. They could not explain why my body began to betray itself when it did or why my liver and spleen took the greatest impact.
“We have no explanation for this.”
“If you continue to vomit blood, we’ll need to remove your spleen.”
“You’ll eventually need a liver transplant and lifetime supply of medication to treat this.”
Since being diagnosed 14 years ago, I’ve studied the mind-body connection and how trauma and stress impair the developing immune system and nervous systems. I was determined to find answers. Now that I have them, I'm eager to share all that I've learned.
The immune system is the powerhouse resting in the middle of our body. It’s responsible for protecting us from invading microorganisms such as viruses, bacteria and parasites. Antibodies are an essential part of the immune system that recognize specific proteins in foreign cells. They signal the immune system that there is something to attack.
With an autoimmune disease, the body accidentally creates antibodies and targets the body’s own proteins- these are called autoantibodies. The immune system then begins to betray the body and attack or “target self”. It begins to impact the regular functioning of the body. Autoimmune diseases can impact any organ or system of the body.
My immune system began to attack itself during my senior year of high school. At first the symptoms were less noticeable. Fatigue and brain fog. Then weight loss and trouble staying awake. I visited my longtime pediatrician and explained my symptoms. She ran tests and diagnosed me with the mono virus. While at dinner with friends, they noticed new bruises appearing on my body. Bruised earlobes, arms, hands and legs (any area of my body that had pressure began to bruise in a matter of minutes). Once I made it home, my mom took me to the emergency room. I was then taken to another hospital by ambulance. Due to my low blood count, I had to have several blood transfusions.
I stayed in the pediatric unit for two weeks. My body ached, and I felt incredibly weak. Especially my torso. I could see the upper part of my abdomen swell and it hurt to touch. I squealed in pain when the nurse attempted an ultrasound on my liver and spleen. I had a liver biopsy done to better understand my condition (doctors removed a small piece of my liver tissue to examine under a microscope).
The liver biopsy and other tests confirmed that I had Autoimmune Hepatitis and Idiopathic Thrombocytopenic Purpura (ITP).
ITP occurs when antibodies are detected against blood platelets. Idiopathic means that no one really understands what causes the disease. Thrombocytopenic means that the disease is related to low levels of thrombocytes, which is another name for platelets. Purpura refers to the purplish patches that are raised to the skin due to the bleeding of the capillaries.
Hepatitis means inflammation of the liver. This disease differs from hepatitis A, B and C, which are the result of viral infections. In my condition, the immune system’s T cells directly attack the liver cells causing inflammation in the liver tissue, which explains the painful ultrasound and my yellow skin pigment (jaundice).
I do not have a family history of my autoimmune diseases and idiopathic literally means no one understands what causes the disease. At the time of my diagnosis I was a fit, young and a “healthy” teenager training to play DI soccer at UC Berkeley. I admit, while I ate well and looked healthy, I was under a ton of stress and had been for a long time.
What contributes to developing an autoimmune disease?
Pathogens, chemicals and substances your immune system is exposed to can have an impact. Genetics play a role but are NOT the determining factor. People experiencing acute or unmanaged stress or chronic stress are at a greater risk. Similarly, sleep issues, lack of movement, poor diet, poor sleep and drug exposure also increases the likelihood of developing autoimmune disease.
The Final Puzzle Piece: the ACE Study
Several years ago I came across a TedTalk that explained everything I had spent years searching for. In her TedTalk, Dr. Nadine Burke Harris educates us on how harmful stress is to the body and mind, especially for children and adolescents (listen here). With a greater understanding of how our immune system, nervous system, hormonal system and brain circuitry is developed in our early adolescence and how trauma directly influences those regions I have been able to better educate myself on the link between childhood trauma and adult illness. This has changed how I approach my health and well-being and has made an impact on my work as a health coach. I wish my pediatrician or other doctors probed more questions about my well-being at home or asked if I was experiencing stress or tools to manage stress. Instead, it was symptoms and tests and nothing in between. Thankfully, today, pediatricians, clinicians, health professionals, teachers and counselors are being educated on the Adverse Childhood Experiences Study (ACE study). Dr. Nadine Burke Harris is a trailblazer on the subject and I wish I had a doctor like her when I was younger.
What can you do right now to improve your health?
How Did I Find Healing?
While being diagnosed was incredibly scary, it gave me the opportunity to better understand my body, my immune system and how to better support them. Stress management, self-care, restoration and nourishment were essential to my well-being. The greatest change was my diet. In college, while still learning about my condition, I became a vegetarian and ate mostly raw foods and a ton of seeds and nuts for proteins- what a mistake!!! Years later and after completing education in nutrition and holistic healing, I was able to make additional changes to my diet such as eating specifically for my autoimmune diseases.
It takes serious commitment and dedication but I'm living proof it can be done. Because I've been diagnosed with several autoimmune diseases, the likelihood I develop more is three times greater than someone without one. Because my ACE score exceeds four, my life expectancy is 20 years shorter than someone with an ACE score of zero.
I’m living and breathing proof that organs can regenerate, and an ill and frail body can find health and strength after illness. Even more amazing is how my internal body (mind, soul and spirit) has healed and become the most resilient of all. I’m beyond grateful to be here today to encourage others to live their most radiant lives.
The Deepest Well, Dr. Nadine Burke Harris
How the Body Keeps the Score, Dr. Bessel van der Kolk
The Paleo Approach, Dr. Sarah Ballantyne
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