At Homecare Advocate, our calendars are full of health awareness activities, such as this month’s American Heart Month. We use these events to bring a better understanding of these issues including disease prevention, disease management, and even advocacy. As result, common diseases like breast cancer and congestive heart failure are widely known, and support is available for those dealing with them. But what about other, lesser-known diseases? Where do these people go for help?
Rare Disease Day is celebrated worldwide this Leap Day as the world focuses on these 6,800-something rare diseases that all too often go unnoticed individually but affect nearly 1 in 10 Americans collectively.
The diseases these individuals deal with are uncommon, leaving many feeling isolated. Oftentimes these rare diseases are ‘severe & chronic, disabling, incurable, difficult to manage, and psychologically damaging as people struggle with the isolation, despair, and lack of hope’ according to Europe’s rare disease organization, Eurodis. However, they share some common traits and would all benefit from additional research & development, a compassionate friend, and optimism for the future.
Perhaps you’ve had some exposure to some of these diseases through the movies, such as The Elephant Man (Proteus syndrome), Simon Birch (Morquio syndrome), or Amélie (osteogenesis imperfecta). Or perhaps you have a direct experience with the someone whose life is impacted by a rare disease.
When these diseases are personalized, a powerful thing happens. We develop a deep empathy and connection to those afflicted and are far more likely to help. It isn’t Patient #20934823; it’s Emma. And when it’s Emma (or George, Liam, Margaret…), we care.
Carter Cline is a sweet 18-month old who this week underwent a grueling 6-8 hour surgery in the latest effort to deal with his numerous health problems from OEIS Complex. According to his parents, “O.E.I.S Complex consist of an Omphalocele (some organs in a sack on the outside of the body), Exstrophy of the bladder (bladder on the outside of the body turned inside out), Imperforated anus and a Spinal defect.”
I first learned about Carter through a friend of the family. He told us about the incredible journey Carter and his parents are on and encouraged us to read about it in the family’s blog. Though this blog is written about the trials and triumphs of this little boy, it tells a larger story of family, hope, and perseverance that all of us can relate to, no matter our obstacles. Millions of Americans on their own courageous journey with a rare disease can relate to the doctor & hospital visits, the frustrating lack of information readily available, and the determination of loving parents who will never give up on their child.
One of the great things about Rare Disease Day is that it helps us see in collective mass what may be invisible individually.
In honor of Rare Disease Day and the millions of Americans like Carter who are impacted, let’s adopt the National Institute of Health‘s focus and commitment to:
- “Raise awareness of rare disease”
- “Strengthen the voice of patients & patient advocacy groups”
- “Give hope and information to patients”
- “Emphasize rare disease research & new therapeutics”
- “Get equality in access to care & treatment”
And above all, remember the person behind the disease. We’re each different in our own way and face our own struggles. But we can positively impact one other’s lives, bring joy, and give hope. Don’t miss the opportunity to connect with others bring a little sunshine into their lives.