Why We Celebrate Rare Disease Day
*If you’re new here or you aren’t familiar with the story of Jessa’s auto-immune diagnosis read this blog post first.
Once a year, on February 28th, we pause to celebrate Rare Disease Day and our rare girl, Jessa; doing our small part to bring awareness to many rare diseases worldwide!
Rare Disease Day actually falls on February 29th (the rarest day of all) but it is celebrated on the last day of February. This day is SO important because there is not much funding, information or support for rare diseases. Unfortunately, when something doesn’t affect a large group of people the profit margin for research and development is small. This is why independent organizations like the Cure JM Foundation are SO important!
If you’re unfamiliar with rare diseases, here are some interesting facts:
”Rare Diseases” are diseases that affect fewer than 200,000 people in the United States.
The majority of rare diseases are observed at birth or during childhood.
90% of rare diseases are currently without any FDA approved treatment.
Most rare diseases are genetic, or have a genetic component.
There are approximately 7000 rare diseases worldwide.
We can truly say that our daughter Jessa one in a million!
Statistically speaking, Juvenile Dermatomyositis (JDM) affects only 1-2 children per million in the USA. Misdiagnosis of JDM is quite common, since the rarity of the diagnosis means that most doctors and specialists will never come across the disease. We are so thankful that our journey from thinking something was not right, to seeing a specialist and getting the JDM diagnosis was only 2 weeks! This kind of timeline is definitely a rarity, and we are so grateful to God for placing the right doctors and specialists in our lives at the right time for this to happen so swiftly.
The Cure JM Foundation has been a HUGE support for us throughout our journey. The community we have found with such a rare diagnosis has been amazing. We are so thankful to have other families to walk alongside and to have a safe space to ask questions, to vent or to grieve. A community to support and lift one another up as we support and advocate for our kids.
On Rare Disease Day we share our story, and bring a little extra light to our rare girl!
Resources:
Learn more about Jessa’s rare diagnosis at www.curejm.org.
Learn more about this day and other rare diseases at www.rarediseaseday.org.
