The following article is by our amazing Nurse Practitioner, Kathleen Sievert (FNP-C). It tells her own story of living with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. We hope it inspires and encourages you in your own journey to Fully Functional...
While I am thrilled to serve The Center for Fully Functional Health as a Nurse Practitioner, my journey with CFFH started as a patient with Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that can affect the skin, joints, and blood vessel walls, and it has had a drastic impact on my life. This is my story, and thanks to Carmel integrative medicine doctor, Dr. Ellen Antoine, it has a happy ending!
There are three diseases that are well-known in the Ehlers-Danlos Syndrome community, often referred to as the "trifecta" of EDS.1 These include EDS, Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS). They all appeared at a young age for me. However, nobody was able to connect the dots until I was in my twenties.
I passed out for the first time when I was just three years old; this was my first experience with POTS. My legs would also fatigue quickly as a child, and I frequently wanted to be carried - an important sign of EDS in small children.
I was also physically sensitive in other ways. I could only use one brand of baby products because my skin would react to everything. I had to be careful not to touch grass or be outside too long, or my allergy symptoms would become debilitating. Now I recognize these were the first signs of MCAS. By the time I reached elementary school, I was in the throes of the EDS trifecta.
Throughout my childhood, my body was in constant "fight" mode because it was working overtime just to function. My bucket of symptoms and stress was slowly filling up, and that bucket finally overflowed when I was 17 years old. I was entering my senior year of high school when my body reached the breaking point.
My genetics were complicated by a toxic mold exposure and a horrible case of food poisoning. This is when I went from being a three-sport athlete to struggling to make it through the day. I lost 20 pounds due to severe gastrointestinal issues and had to sit out the games that I loved because my POTS symptoms and heart murmur made things too unsafe to continue.
By the time I was finally cleared by my cardiologist to return to sports, I had lost an enormous amount of muscle. My inflamed body couldn't handle the workouts anymore. I sprained my ankle three times, tore my meniscus and MCL in my knee, and broke 2 fingers. I developed tenosynovitis and ganglion cysts in my wrist, shin splints, and patellar tendonitis - all within my senior year of high school.
I couldn't understand why my health was deteriorating so quickly. I turned to my conventional doctor for answers, starting a long and painful journey. I received various diagnoses, which included hormone imbalances, gastrointestinal issues, autoimmunity, and, of course, multiple unexplained orthopedic problems.
Every body system is separated In the traditional world of medicine, so I wound up seeing 12 different specialists! I struggled to find a doctor that would look at the full picture, and I was slowly losing hope that I would ever get better...
Though I was completely discouraged, my parents never gave up the search for answers. My mom turned to the Internet because she felt like there had to be something more out there. This is when she found Functional Medicine.
A whole-human approach made sense to us, so I started changing my diet and discovering foods that were triggering some of my symptoms. However, due to MCAS and a leaky gut, the more foods that I eliminated from my diet, the longer my list of food sensitivities became. I quickly realized that, while changing my diet was helpful for me, I needed more guidance in finding the root causes of my issues.
We turned to the Internet again and found Dr. Ellen at The Center for Fully Functional Health (known as Vine Healthcare at the time). My life changed from there, and I had my hope back after just one appointment.
Dr. Ellen started uncovering root causes for a lot of my health problems. Before even knowing about my EDS diagnosis, my health turned around with the help of Functional Medicine and Fully Functional treatment protocols. Although I would eventually learn that I have a genetic connective tissue disorder that will never go away, with Dr. Ellen's help, I found so many ways to set myself up for success and increase my quality of life.
Dr. Ellen used the Five Pillars of Becoming Fully Functional to turn my health around. During my first appointment, we identified things that were negatively impacting my health. These included contributors such as stressors, toxins (mold), and inflammation that complicated my already-complex genetics.
Next, we found ways to reduce these factors in my life - the second pillar of my treatment. It was eye-opening to see how much I could control! The third step was to optimize my detoxification pathways. CFFH had multiple Med Spa services to help me with this, including the full spectrum infrared sauna, red light therapy, and lymphatic drainage.
The fourth pillar involved supporting my body structurally, biochemically, and personally. My structural support is weakened by EDS, so finding ways to compensate for this was important. When I looked back to high school, I realized that a lot of my EDS-related joint issues accelerated when my muscle mass declined from decreasing my workouts. CFFH helped me again by supporting me with physical therapy, where I learn to use the appropriate muscles and gain muscle mass to help with my hypermobility.
Biochemical support was also important because I was initially deficient in a lot of nutrients that were needed for key cellular processes in my body. Without these proper nutrients, my body was not able to detox or make energy appropriately.
The fifth Fully Functional pillar is personalization. The entire plan that Dr. Ellen put together for me was personalized based on my genetics, medical history, nutrient needs, and unique body chemistry. Although my case was complex and my symptoms spanned decades, she was able to assemble the puzzle and help me discover what was right for me moving forward.
Through this process, I was able to turn my health around so that I can now live Fully Functionally WITH a genetic disorder. My pain is better, my fatigue is better, my stomach is better, and my hormones are better balanced. I still have hypermobility, and I will always have a higher risk of injuries because of EDS. But when I do have those bumps in the road, I can recover so much more easily now.
Not only did The Center for Fully Functional Health help me turn my health and life around, the care I received inspired me to train as a Functional Medicine Nurse Practitioner. Now I am privileged and blessed to help patients just like me on their journey to Fully Functional!
If you are dealing with Ehlers-Danlos Syndrome or another complex set of health issues, please call us at (317) 989-8463, Monday - Thursday 8AM to 5PM Eastern, or contact us online. We would be honored to help you find hope and healing.
Article Sources
1 https://www.ehlers-danlos.com/one-gene-mutation-links-three-mysterious-debilitating-diseases/
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