Coronavirus Disease Impact and Resources

— Categories: Press Release     Posted on March 19, 2020

View some helpful links to important information on ways to stay healthy and up to date on the coronavirus (COVID-19).

The last few months have been extremely unique and presented our world with many challenges. Living with an ependymoma, you may already be feeling a sense of burden from existing health related concerns. These times are truly unprecedented and it important to do our best to take care of ourselves both physically and emotionally.

The term ‘immune compromised’ refers to persons whose immune system is considered weaker than the average person. Factors that increase immunocompromise include, but are not limited to: corticosteroids (steroids), radiation, many cancer treatments (chemotherapy), advanced age, and serious illness of other organ systems. If you have never, or only remotely had cancer treatment, you may be minimally immunocompromised. If you are currently, or have recently had cancer treatments, you may be more compromised. Ask your provider to help you understand your risk and create an individualized care plan. You are encouraged to contact your provider if you believe that you, or a close contact, may be ill or have been exposed to an ill person. Source: Society for Neuro-Oncology

Impact on Our Community

We are a community that is already very aware of the fragility of life and the immense gift of health. During this time, we can help encourage each other. Hear how COVID-19 has affected members of our community and resources to help you cope.

Stay Informed and Healthy

There is a lot of information out there on COVID-19. We recommend trusted sources that are producing the most accurate information and updated regularly. Here is a list of resources to learn about the virus and ways to stay healthy.

Appointments and Second Opinions

We recommend contacting your current medical providers directly to ask questions about current treatment plans, physical therapy appointments, or other medical appointments. Most provider offices, clinics, infusion rooms, have limited hours, staff, and services. Most hospitals, surgeons and procedural doctors are postponing “elective” and “routine” procedures.  Contact all providers as soon as possible to individualize your rescheduling, as well as get up-to-date information and instructions.

Telemedicine (a.k.a., virtual visits via livestreaming video) is available to most of your providers. It is a highly secure method of communication that usually only needs internet and a device such as a computer, ipad or smart phone. Prepare for virtual visits by preparing both questions and requests you will ask your provider. Ask if you can record the visit. Ask if you can have a written summary of your visit. Ask friends and family to help you prepare for the visit and/or be present. Source: Society for Neuro-Oncology

Given the current situation, we are encouraging physician-to-physician consultation first if there is a need for expert opinion. If this is not an option, you can start the initial process of seeking a second opinion through email or phone at the desired center and follow the guidance from the institution on next steps.

Download these signs for use at your home. Source: National Brain Tumor Society

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