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Published on: November 7, 2020
Caring for patients with rare diseases during the COVID-19 pandemic
Mohamed Boudjelal1, Nimer Mehyar2, Bandar Alghanem2
1Ministry of National Guard-Health Affairs, King Abdullah International Medical Research Centre, King Saud bin Abdulaziz University for Health Sciences, King Abdulaziz Medical City, Riyadh, Saudi Arabia. boudjelalmo@ngha.med.sa.
Insights
Patients with rare diseases are vulnerable to severe COVID-19 due to weakened immune systems and co-occurring disabilities. Special care and educational programs are crucial for this population during pandemics.
Area of Science:
- Immunology
- Rare Diseases
- Infectious Diseases
Background:
- Rare diseases often compromise the immune system, increasing susceptibility to severe infections like COVID-19.
- Patients with rare diseases may have co-occurring intellectual disabilities, complicating healthcare management.
- The unique challenges faced by rare disease patients during pandemics require specific consideration.
Purpose of the Study:
- To highlight the increased vulnerability of rare disease patients to severe COVID-19.
- To emphasize the need for tailored care strategies for rare disease patients during health crises.
- To advocate for the development of specialized pandemic preparedness programs for this population.
Main Methods:
- Review of existing literature on rare diseases and viral infections.
- Analysis of the impact of rare disease phenotypes on immune response.
- Consideration of the implications of co-occurring disabilities on patient care.
Main Results:
- Rare disease patients exhibit heightened vulnerability to severe outcomes from infections like COVID-19.
- Medications for rare diseases can further impact immune function, necessitating careful management.
- Existing pandemic response plans may not adequately address the needs of rare disease patients.
Conclusions:
- A specialized approach is essential for managing rare disease patients during pandemics.
- Educational initiatives tailored for individuals with intellectual disabilities are vital for public health compliance.
- Global health organizations should integrate rare disease considerations into pandemic preparedness strategies.
Abstract:
Rare diseases frequently attack and weaken the immune system, increasing the patient's vulnerability to develop severe conditions after viral infections, such as COVID-19. Many patients with rare diseases also suffer from mental retardation and disability. These rare disease phenotypes do not emerge in older people who are susceptible to COVID-19 infection, but present at a very young age or at birth. These factors must be taken in consideration when caring for this vulnerable patient population during a pandemic, such as COVID-19. Patients with a rare disease have to take their regular medication continuously to control their condition and frequently, the medications, directly or indirectly, affect their immune system. It is important for this patient population, if infected with COVID-19 or another severe form of infection, to adjust the treatment protocol by specialists, in consultation with their own medical team. Special awareness and educational programs, understandable for mentally retarded patients, must be developed to educate them about social distancing, curfew, sanitization, and sensitization to the disease and quarantine. The COVID-19 pandemic highlighted the importance to reconsider the care required by patients with a rare disease during a pandemic or disaster, a program that should be adopted by the World Health Organization and governmental institutions for consideration.
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