My 28 Days - a global digital women’s health initiative for evaluation and management of secondary amenorrhea: case report and literature review

Abstract

There is a need to close the gap between knowledge and action in health care. Effective care requires a convenient and reliable distribution process. As global internet and mobile communication increase capacity, innovative approaches to digital health education platforms and care delivery are feasible. We report the case of a young African woman who developed acute secondary amenorrhea at age 18. Subsequently, she experienced a 10-year delay in the diagnosis of the underlying cause. A global digital medical hub focused on women’s health and secondary amenorrhea could reduce the chance of such mismanagement. Such a hub would establish more efficient information integration and exchange processes to better serve patients, family caregivers, health care providers, and investigators. Here, we show proof of concept for a global digital medical hub for women’s health. First, we describe the physiological control systems that govern the normal menstrual cycle, and review the pathophysiology and management of secondary amenorrhea. The symptom may lead to broad and profound health implications for the patient and extended family members. In specific situations, there may be significant morbidity related to estradiol deficiency: (1) reduced bone mineral density, 2) cardiovascular disease, and 3) cognitive decline. Using primary ovarian insufficiency (POI) as the paradigm condition, the Mary Elizabeth Conover Foundation has been able to address the specific global educational needs of these women. The Foundation did this by creating a professionally managed Facebook group specifically for these women. POI most commonly presents with secondary amenorrhea. Here we demonstrate the feasibility of conducting a natural history study on secondary amenorrhea with international reach to be coordinated by a global digital medical hub. Such an approach takes full advantage of internet and mobile device communication systems. We refer to this global digital women’s health initiative as My 28 Days®.

A call for a US National Institute of Women’s Health and Human Development

“…A global digital medical hub for women’s healthcare and research would reduce mismanagement and provide efficient information exchange processes among patients, healthcare providers, family caregivers, and investigators. One such report highlights the case of a young African woman who experienced a 10-year delay in the diagnosis of secondary amenorrhea ( 1 ). The article also discusses the physiological control systems governing the normal menstrual cycle and the pathophysiology and management of secondary amenorrhea, which can lead to significant morbidity related to estradiol deficiency.…”

“…It would offer flexibility, convenience, and efficiency to patients and healthcare researchers. One report has demonstrated the feasibility of creating a global digital medical hub for women’s health for one specific rare disorder, Primary Ovarian Insufficiency (POI) ( 1 ). A digital medical hub combines the community-building power of social media, peer-reviewed research, and global digital connectivity.…”

Primary Ovarian Insufficiency: A Case of the Cart before the Horse

“…There is a need for more research aimed at the specifics of hormonal health during puberty and the years as young adult women. One initiative bringing attention to this area of need is the global digital women's hormonal health program called My28Days.org [21,22]. The My28Days.org initiative, organized by the nonprofit Mary Elizabeth Conover Foundation, is establishing a social enterprise approach to Overt POI to permit nonprofit and for-profit entities to collaborate ethically and advance patient care and research on the condition with the needs of patients maintained at the center of the enterprise [22].…”

“…Global internet connectivity makes a global digital women's hormonal health network feasible. One report by My28Days.org has demonstrated proof of principle for this approach [21].…”