A PIDD patient living in New York during the Pandemic
Joanna has years of experience living with rare disease and the knowledge of how best to manage her life, protect herself from infection and learn when to say no.
As any Zebra will attest to, she has faced disappointment, spent time alone instead of attending parties, vacations and professional opportunities. Jo became expert early on at making the best use of her time at home. PI patients are used to ‘co-existing with a level of uncertainty and loss’.
Jo believes those tools make us uniquely suited to better manage the pandemic that currently has everyone so worried. ‘What’s brand new to the public is second nature to most of us. So we have something to contribute during this crisis’.
Joanna lives on Staten Island in New York – she’s right in the midst of the COVID-19 mess. She’s spending lots of time social distancing and wearing a mask – especially since she has hypogammaglobulinemia and hypocomplementemia. She was diagnosed in her early 20’s – after being sick with respiratory and ear infections for years.
Joanna was wrapping up her Bachelor’s degree in anthropology and sociology when her health became unmanageable. Since she was no longer on her parents’ health insurance- she left school to try and work full-time for health insurance. Jo gave up her career to manage all of her symptoms instead.
Now she’s currently a patient advocate and social media influencer. She works on the steering committee and is a legislative task leader for a national coalition of patients, advocates, secondary providers and payers.
If you live in New York – you may have seen Jo on the side of a truck.
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Joanna has lived through 9/11 and Hurricane Sandy. Now she’s an immune deficient patient living in one of the hardest hit areas by COVID-19. ‘Each day I see more friends have lost loved ones to this virus’ She feels the stress and fear daily- ‘unlike any we have experienced before’.
What has Jo learned from living with PI? ‘The human body and spirit is capable of much more healing given the right opportunities’.
I’ve had the pleasure of meeting Joanna in person at several IDF National Conferences. She is truly a joy to be around.
THANKS JOANNA FOR SHARING WITH US
Stay well
Later,
C
