Dear Pheo Para Phriends,
Due to the COVID-19 pandemic, Pheo Para Alliance is working closely with our Medical Advisory Board to identify information that may be specific to our patient population. There is still much to learn about the virus, but, currently, the best way to prevent getting sick is to avoid being exposed. The Center for Disease Control recommends washing your hands frequently, putting distance between yourself and other people, and staying home as much as possible. Please refer to the CDC website to learn additional ways to protect yourself, your family and prevent the spread.
Some people are at higher risk of getting very sick from this illness. This includes older adults and people who have chronic serious medical conditions such as heart disease, diabetes and lung disease. In addition, people who are immunosuppressed (weakened immune system), which may be due to chemotherapy, radiotherapy and other reasons, also have an increased chance of getting very sick from COVID-19. It is important to discuss your situation with your doctor who knows your medical history.
Our motto is “Stronger United” and, during this time, we ask everyone to help protect those who are at higher risk by staying home and socially distancing. It is also suggested that you ask your healthcare provider about obtaining extra necessary medications in case there is an outbreak in your community.
Pheo Para Alliance continues to provide resources, education and virtual support for those affected by pheo para. We will still hold our online support group meetings and educational webinars and engage on social media and via email. Because we are a rare disease, we are positioned to provide resources and support despite not being in close proximity to one another.
Here are some resources that might be helpful:
Pheo Para Alliance Recorded Webinars – COVID-19 & Pheo Para
Q&A about neuroendocrine tumors and COVID-19 – https://norcalcarcinet.org/covid-and-nets/covid-19-nets
For those affected by MEN2 – https://www.amend.org.uk/news/coronavirus-covid-19/
Resources from Net Research Foundation – https://netrf.org/for-patients/living-with-nets/coronavirus-disease-covid-19-outbreak/
When to Stay Home and When to Go In To Your Doctor from survivornet.com – https://www.survivornet.com/articles/cancer-patients-covid-19-when-to-stay-home-call-and-when-to-go-in-to-your-doctor/
COVID-19 Resources from National Cancer Care Network – https://www.nccn.org/covid-19/default.aspx
National Organization for Rare Diseases Resources – https://rarediseases.org/covid-19-resources-for-non-profit-leaders-and-the-community/
National Organization for Rare Disease Financial Assistance for Patients due to COVID-19 Program
Wishing our entire pheo para phamily safety and security during this time.