Local patient advocate Ms. Shannon Killebrew has been selected as a National Organization for Rare Didsorders (NORD) Rare Impact Award Honoree. She is one of only six distinguished award honorees from across the country! Most amazingly, she is the only bed bound recipient to achieve such a honor.
NORD's Rare Impact Awards will be presented on May 4 at the Smithsonian National Portrait Gallery in Washington, DC. This event will punctuate NORD’s 40th Anniversary Celebration by recognizing distinguished rare disease innovators, advocates, and partners from 40 years ago to today.
Ms. Killebrew is a Statesboro native and Founder of Shannon's Hope for House Calls and Home Medical Care. Shannon's Hope works to ensure a safe space for support and sharing while synergizing together to create a more accessible world of in-home medical care for the most fragile and vulnerable who cannot travel. "Meeting People at their level of need" is the Shannon’s Hope advocacy motto.
Ms. Killebrew is a bed-bound person herself with severe physical limitations and requires 24-hour assistance. Despite these challenges, she has tenaciously used her abilities to advocate for her own needed care and for all others.
In 2006, she was overcome by rare and disabling symptoms. After an arduous year of losing much of her health, independence, and career, she was diagnosed with Reflex Sympathetic Dystrophy. A rare disease nicknamed by modern medicine as "the suicide disease" due to the disabling symptoms and pain.
Over a period of 16 years. Ms. Killebrew lost much of her life as she knew it and became entirely dependent upon others for survival. She survived the grief of a "lost life" with the heartbreak of an unknown future.
Ms. Killebrew states, "I witnessed first hand the stigma, ostracization and the woefully inadequate knowledge of my rare disease from a plethora of medical professionals, even hospitals. This was terrifying. If so little is known, how is anyone ever to attain adequate care for quality of life?"
As she became unable to travel without severe detriment, Ms. Killebrew faced a bed-bound life with no medical care as her longtime primary care physician did not offer house calls. Neither was telehealth a consideration from her physician. It was desperation to survive that led her to found her patient advocacy.
"My will to survive was my inspiration for Shannon's Hope for House Calls and Home Medical," she said.
The need for in home medical care for 4+ million people in the United States alone is staggering. Along her advocacy journey, Ms. Killebrew has met the bravest rare disease warriors, wonderful medical professionals, and caring family members of loved ones who battle rare diseases.
Her hope is to procure a local physician for house call care for our community. The advocacy has grown as people across the USA and internationally have expressed their need for the same. Ms. Killebrew continually expands Shannon's Hope to more areas, as she wishes for no one to ever feel isolated, alone, and terrified while seeking medical care. Her advocacy truth statement is: "To deny care is to deny life."
Her mission for the immediate future is to bring a heightened awareness of rare diseases to our society. Most importantly, she hopes to bring a proliferated awareness to the medical community itself -- especially to the classroom curriculum for all physicians, physician's assistants, nurse practitioners, and their colleagues.
In order for better quality of care and life, it is imperative that the medical community be more familiar with all diagnoses. Rare is not as rare as it is portrayed to be!! 1 in 10 people battle a rare disease. At present, Ms. Killebrew shares that obtaining care for rare diseases can be as rare as the disease itself.
She hopes to see a world with ample accessibility for rare disease patients, a future where no one with a rare disease is ever turned away due to the very needs for which they seek care, and a future in which the medical community offers the same respect and dignity to the disabled as it affords to the healthy individual.
In past days, physicians made house calls routinely to "first do no harm" to their ill patients. Travel can be most detrimental on a fragile body. This level of care is desperately needed once again!
"At present day, we have technology that allows for ultrasounds to be handheld, test results to be electronically transmitted in real time, labs to be mobile, and so much more. The possibilities of medical care for the rare or fragile patient are phenomenal! We need the medical community, itself, to join us in this vision!" Ms. Killebrew said. "My hope is to use my experiences and my own traumas as a voice for my fellow homebound, bed-bound and fragile individuals. I hope to create an awareness that is pervasive within the medical community and opens paths for house call and concierge medical services to be routinely accessible for all in need. It is my honor and privilege to know such brave and wonderful people. Together, we can be change and bring a new HOPE! This is my hope. This is Shannon's Hope. My mission is for Shannon's Hope is to open the hearts, ears and minds of the medical community for equality of care as a staple, not a rarity. I can envision a future where rare is no longer a barrier! May the stigma of rare diseases be forever erased from our world."
