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.
- What the brain tumor community needs to know from the NBTS
- Hear ways to manage your self-care when feeling stressed by NCI-CONNECT
- Closed doors, open hearts from Tamiko
- People with serious illness can teach us a lot about living with COVID-19 from Adam
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.
- Patient and caregiver fact sheet and community webinar from SNO
- Impact on at-risk populations and important facts you should know from the ABTA
- What the brain and spine tumor community should know from the IBTA
- Support for pediatric families from the PBTF
- What does COVID-19 mean for children with cancer from St. Jude Children’s Research Hospital
- What people with cancer should know from NCI
- Get the latest public health information from CDC
- Get the latest research information from NIH
- Learn about travel restrictions, preparing and government response from USA Government
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
