The story of Seri
It is hard to know where to begin on Seri’s story. Seri is 16 and instead of school, driving, and friends she is dealing with doctor’s appointments, hospitalizations and painful treatment after treatment due to her diagnoses of Ehlers Danlos Syndrome, Dysautonomia, and Autoimmune Encephalitis with Opsoclonus Myoclonus Ataxia Syndrome.
Seri has always had some struggles. When she was 3 she began passing out when she was injured or startled. Doctors called it vasovagal syncope and said she would grow out of it. In elementary school she suffered frequent headaches, Gastroesophogeal Reflux, and asthma. It was not until she entered middle school that her health began to take a sharp decline and school absences increased. At the age of 11 she began having joint pain and frequent dislocations. She passed out frequently, her asthma was out of control, she had headaches and episodes of vomiting, was tired all the time, and had trouble keeping up with her activities of competitive swimming, band, and dance. It wasn’t until 2015, as she entered her freshman year of high school that she was diagnosed with a genetic connective tissue disorder called Ehlers Danlos Syndrome and a nervous system disorder called Dysautonomia. Both of these conditions greatly impacted her quality of life and took away many of the things she loved. She was unable to participate in marching band and had to give up swimming and dance in order to focus on her health.
In spring of her freshman year she began having muscle tremors on the right side of her body that doctors attributed to her Dysautonomia. We treated the dysautonomia with medications and hydration and the tremors seemed to improve. She suffered another episode in July that summer following a mysterious allergic reaction that broke her out in hives after molded cabinets were demolished from our home that was flooded in April of 2016. This resolved with treatment in the emergency room until October of 2016 when Seri started having episodic tremors every few days that would last anywhere from a few minutes to hours. The tremors were thought to be possible seizures and she was again hospitalized for testing. Doctors were unable to determine the cause and deemed it psychological. She was sent home, feeling defeated. During the following weeks her symptoms only became worse. It was not until early November that she saw her neurologist again, having near constant full body tremors that dislocated her joints and caused profound muscle weakness, involuntary eye movements, difficulty walking, talking, swallowing, thinking and processing information. Seri was immediately sent to the hospital where a team of doctors ran all sorts of tests and ultimately diagnosed her with Autoimmune Encephalitis with Opsoclonus Myoclonus Ataxia Syndrome, basically her own immune system had started attacking her brain cells. She was treated with immunotherapy and released only to relapse as oral steroids were tapered in December. The treatment process was started over again, adding chemotherapy to suppress her immune system to stop its attack on her brain. Shortly after her second chemotherapy infusion, Seri developed a life threatening cardiac arrhythmia due to an underlying heart problem we were previously unaware she had coupled with a reaction to the medication. She was treated in Pediatric ICU with a cardiac ablation procedure and more medication.
Seri continues to fight, having relapsed her Autoimmune Encephalitis again in January 2017. Doctors still have not been able to determine the cause of the AE. Her condition has further aggravated her EDS, her joints are looser than ever and dislocate easily as she has not been able to do her normal level of physical therapy. She also suffers frequent complications of her dysautonomia due to the physical deconditioning of her body. She fights every day to get out of bed, to keep moving, to keep living. Doctors are re-evaluating her treatment plan to further suppress her immune system and to provide more frequent immunotherapy infusions in order to halt her body’s attack on itself. Family and friends have rallied around Seri and our entire family to help us fight, to help our daughter get her life back.
For more information about any of Seri’s conditions, visit the following websites:
http://ehlers-danlos.com/
http://www.dysautonomiainternational.org/
https://aealliance.org/
https://www.omsusa.org/
https://www.facebook.com/SERISFIGHT/