#journalesque
If you’ve been following me on Instagram, you may know that we’re currently battling a health issue with our daughter. With two hospitalizations in one month under our belt, I’m exhausted in every way possible.
We are one of the many American families that are on the path to a diagnosis. Diagnosis for a rare disease takes an average of 4.8 years. From NHGRI:A rare disease […] affects fewer than 200,000 people in the United States at any given time. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30 million Americans. Globally, 350 million people worldwide. Rare is everywhere, but also nowhere at the same time: health care coverage, access to highly-specialized resources, pharmaceutical drugs & access to multiple treatment options. But we’re also at a place where we can’t technically say what she has is rare. Remember? 4.8 years? Yep.
The pandemic is hard. This has made it harder. And my heart hurts.
Food is comfort. Food is love. More to come.