Positive Impact of Social Media on Disease Awareness and Management in Patients with Inherited Bleeding Disorders: Saudi Experience from a Tertiary Care Hospital

Introduction: Technology has changed the way individuals interact , a published report ranks Saudi Arabia seventh in the world for individual social media accounts. Social networking has evolved so has the dynamics between patients' and health care providers, with patients incorporating social media as part of their disease management. Pediatric Hematology / Oncology Department at King Faisal Specialist Hospital and Research Centre, Riyadh witnessed similar approach by families. Method: WhatsApp groups titled "Consult your Doctor" and "Female Glanzmann Thrombasthenia (GT) Support Group" were created by father of a hemophilia patient and mother of a female GT patient respectively. Hematologist, hematopathologist, dietitian, gynecologist dentist, in addition to nurse practitioner, clinical pharmacist, physiotherapist and social worker were added to the groups for comprehensive care. Patients and families started referring one another to respective groups. Results: Hundred participants were added to "Consult your Doctor" group over two years ,with most patients with Factor VIII deficiency. An average of five consults per day , involving trauma and factor replacement therapy. Concerns involving local control, oral bleeding, dental extraction were addressed too. Thirty participant were added to the "Female GT Support Group" within a year involving discussions related to first time menstruation, heavy periods, mucus membrane bleeding, oral contraception and post-marital concerns. Women who bore children shared their experiences and information on risk of giving birth to an affected child. Non-medical concerns like, appointments, insurance, vacations etc. were addressed on both groups. Conclusion: Parents were psychologically relieved to learn they are not alone and felt comfortable sharing their stories resulting in better understanding of disease spectrum i.e. mild to severe helping them remain calm avoiding immediate emergency room visits. In our experience social media proved to be an effective support group model for disease awareness and management even in conservative societies such as Saudi Arabia.