It’s February! That means, Superbowl, Valentine’s Day, National Pizza Day and many other things, depending on where your interests lie. In this post, I’d like to raise a flag for National Rare Disease Day, which is on February 28th this year.
The Olivia Caldwell Foundation raises funds to support pediatric cancer research and the Specialty Pediatric Outreach Clinic. But we also have our Patient Advocacy Program that jumps even further in caring for families with children diagnosed with any - yes, any - chronic illness or medically complex condition. The goal is to help these families find support in any area of life they need to be able to take the best care of their child and themselves on this medical journey.
A diagnosis is difficult and I don’t know that it matters so much to compare one over another - it’s all just hard. It can feel isolating no matter what it is, even if it is a more well-known battle like cancer (which is a broad term with many different kinds under its umbrella). To be considered a rare disease in the US, it needs to affect less than 200,000 people. We only have about 500,000 in our entire state… I’m not a math whiz, but that feels pretty lonely. According to the National Organizations for Rare Diseases, two-thirds of Americans that do have a rare disease are children. Ninety-five percent of these have no known treatments. 95%. That’s a lot of families - as rare as it is - with a very hard road ahead of them.
Imagine that your child has a rare genetic disease. Most of the treatments that you would need for your child would be considered “alternative” (not FDA approved), which means they are not readily (if ever) approved by insurance, including Medicare and Medicaid. Most organizations that offer assistance typically align with those same standards, which means there is not much help out there for specific diseases to relieve the financial burden to help parents/guardians get the care that is available for their child. Now add into the scenario that you live in rural Wyoming. We have some wonderful and very gifted medical professionals in our state, but to find this sort of specialty care for children, will always take you far from home and it’s likely that it will be often. The ripple effect is more like a high tide wave when it comes to work, school, and daily life just to find some medical help for your kiddo.
This is all pretty heavy and to be clear, having a rare disease diagnosis does not always come with shortened life expectancy. And it is an uphill battle for quality of life for these children and their families. How can we be supportive of our neighbors? Continue to raise awareness for their cause! Be a form of support they need - social, emotional, financial. We may not be the scientist able to find the cure, but we can be the meal train director and the dog sitter and school carpool driver and compassionate friend that helps in many areas to make the road less lonely and more manageable while these families face their diagnosis one step at a time! If you would like more information on rare diseases or National Rare Disease Day, check out https://rarediseases.org/.
If you or someone you know has a child diagnosed with a chronic illness or medically complex condition, our Patient Advocacy Program is here for you. I would be happy to help you navigate where to find support that you need, especially if we have to think outside the box on how to get it! You can reach me at the office at 307-333-1273 or firstname.lastname@example.org.
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