I am delighted to be welcomed to the Putting Rare Diseases Patients First!® (PRDPF!) Board of Directors as your parent representative. As a Mom to a 13-year old child with a rare genetic condition, I understand and empathize with your plight to be “all-in-one” caregivers and supporters for your children and families. Wearing another hat as a healthcare provider, I have a unique perspective to see our challenges from multiple angles. My hope in joining Putting Rare Diseases Patients First!® is to provide you with support and invaluable resources. Just knowing someone has ‘walked in your shoes’ and can understand some of the hurdles that you are experiencing can be invaluable.
As this is being written, I am acutely aware that this time of International uncertainty with the coronavirus/COVID-19 pandemic creates unrest, stress, fear and anxiety for many, particularly those of us impacted by living with and caring for someone with a rare condition. The Centers for Disease Control and Prevention (CDC) has identified many underlying medical conditions which may increase the risk of a serious COVID-19 infection, as people with these conditions are often immunocompromised and at a greater risk for infections. This thought is always at the “top” of my mind.
Many of us rely on assistance from social support systems, caregivers, nursing agencies that may or may not be able to come into your home given “social distancing” guidelines. Whether or not these supports remain, the unpredictability of what is to come can create added tension in our daily lives. Access to care on any given day can be difficult, and especially challenging during the COVID-19 pandemic. While we adapt to a new “normal”, we are often left sleepless and exhausted, ensuring that our children and families with rare diseases are cared for and stay healthy- away from the hospital.
What I have found helpful during this time is to take a few moments away for myself- even if it’s an extra minute or two washing my hands. Soothing music has also been a good way for me to “relax” (if you can call it that), or at least decompress.
My thoughts are with you all during these unprecedented times. Stay healthy, breathe deep, and try and take a moment to cherish and enjoy your families.
I look forward to supporting you and your families. I can be reached at DSUMMERS@PRDPF.ORG.
Denise Summers, Pharm.D.
Putting Rare Diseases Patients First!® Board of Directors