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Osteopathic Family Physician | Volume 12, No. 4 | July/August, 2020
Disaster Management During the COVID 19 Pandemic:
A Closer Look at Managing Ehlers-Danlos Syndrome and Hypermobile Patients
To the OFP Editor:
The novel coronavirus (COVID-19) pandemic has drastically impacted the lives of all Americans. COVID-19, a coronavirus that causes illness ranging in severity and symptoms, has caused morbidity and mortality throughout the world.1 As COVID-19 spread throughout New York, Governor Andrew Cuomo mandated residents to stay indoors aside from going out for essential supplies, groceries and dire medical care.2 The area of Nassau County, where the Academic Healthcare Center and Ehlers-Danlos Syndrome/Hypermobility Treatment Center resides, was particularly hard hit.
Once the mandatory quarantine went into effect, the Center started receiving a large number of phone calls from worried patients expressing fear and asking for guidance on what to do. Measures including social distancing, staying at home, avoiding as much person- to-person contact as possible and avoiding gatherings of 10 or more people3 were reiterated to all patients via telephone calls, virtual check-ins, telemedicine visits and web portal encounters. The Center’s social media pages showcased the importance of minimizing virus exposure. The Center remained open throughout the pandemic, allowing patients who needed to see the Director to come for an in-person visit. All patients were advised to call the Center first so that proper triage and exposure precautions could be arranged for other patients, staff and providers. At the time of publication, in-person visits still remain at a bare minimum to minimize exposure and protect the patient.
All schools and businesses in New York state remain closed as of the writing of this letter. E-learning has become the new norm in teaching and the New York Institute of Technology College of Osteopathic Medicine (NYITCOM), an osteopathic medical school in Old Westbury, Long Island, suspended all in-person classes for the academic year. NYITCOM is unique because it has Academic Healthcare Facilities, located at two sites in New York, one on the Old Westbury campus and the second site in Suffolk County (Central Islip).
Medical students have worked hard to help during this pandemic. For example, organizations at NYITCOM, such as the Student Osteopathic Medical Association (SOMA), have begun collaborating with outside organizations to assist in efforts to provide PPE and medical supplies to health care facilities. Students have and continue to be contacting local businesses and asking for medical supplies to be donated to these organizations and health care workers. There has been high-level receptivity among medical students at NYITCOM to find additional supplies to help those in need.
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Patients with hypermobility may have cardiac manifestations that include dysautonomia, tachycardia, mitral valve prolapse, palpitations and aortic root dilatation.11,12,15 Patients with or at risk for arrhythmias need to be monitored by an electrophysiologist (EPS) and may require continual monitoring (i.e., via implantable LOOP recorder).15 These patients required continual care during the pandemic. Much of this monitoring was accomplished virtually and with telemedicine.
unnecessary exposure for both the patient and health care workers and see this integration of telemedicine continuing. The Director has been in touch with ER doctors if, on a rare occasion, a patient does need to be sent to the ER and proper protocol, including triage, calling ahead, testing appropriately, have been followed. Coordinating care for emergencies with the hospital and other specialists have been vital during this pandemic. The Center is also a research Center and has received grant funding and although in-person studies have been postponed, research publications and papers are still being investigated by the Director, colleagues and osteopathic medical students who have an interest in hypermobility.
Through the stress of the pandemic, the Ehlers-Danlos/Hypermobility Center at NYIT and the Academic Healthcare Center have worked hard to continue our commitment to care for the hypermobile patients as well as the other patients, staff, students and faculty. The Center for EDS/hypermobility hopes to support the hypermobile/EDS community with education, resources and publications. May was Ehlers-Danlos Syndrome/Hypermobility Awareness Month and a virtual activity is planned to raise awareness of the needs of the hypermobile community and provide education on the subject. The Center has been featured in many publications, media portals and blogs, including the ACOFP blog. Our social media (@nyitedscenter) provides information on the Center and educational opportunities.
The providers at the Center continue to strive throughout this crisis to do what we do best, which is to provide quality patient care (whether in-person or virtually) for the patients.
Osteopathically Yours,
Bernadette Riley, DO, FACOFP, FILM; Todd J. Cohen, MD, FACC; Hallie Zwibel, DO, MPH, FAAFP; Willis Lin, OMS
Severe Outcomes Among Patients with Coronavirus Disease 2019 (COVID-19) — United States, February 12–March 16, 2020. MMWR Morb Mortal Wkly Rep 2020;69:343-346.
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Coronavirus Disease 2019 (COVID-19). (n.d.). Retrieved from https://www1.nyc.gov/site/doh/covid/covid-19-main. page
Collins, F. (2020, March 19). To Beat COVID-19, Social Distancing is a Must. Retrieved from https://directorsblog. nih.gov/2020/03/19/to-beat-covid-19-social-distancing-is-a- must/
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Riley, B. The Ehlers-Danlos Syndromes, Osteopathic Family Physician. January/February 2020; 12:1:26-29. DOI: 10.33181/12013
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Malfait F, Francomano C, Byers P, Belmont J, Berglund B, Black J, et al. The 2017 international classification of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017 Mar;175(1):8-26.
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A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin MedGenet 175C:148–157.
Anjum I, Sohail W, Hatipoglu B, et al. (April 05, 2018) Postural Orthostatic Tachycardia Syndrome and Its Unusual Presenting Complaints in Women: A Literature Minireview. Cureus 10(4): e2435. doi:10.7759/cureus.2435
Cohen T, Riley B, Choi D, Bitterman A, Zwibel H, Bono
N. (November 2019) Cardiology and Electrophysiology Considerations of Ehlers-Danlos Syndrome and Variants, Including Hypermobile Syndromes. EPLabDigest; 19:20.
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