With another Rare Disease Day arriving, I feel compelled to talk about the challenges that we can face as a rare disease population coming from my own experience. It's no secret that we face many challenges in many ways from systemic to personal, and that is why rare disease awareness is so incredibly important. Misdiagnosis/Undiagnosed … Continue reading The challenges we face
Tag: health
A letter to my parents from your rare daughter
Dear Mom and Dad, I never quite knew how much weight and fear you carried as the parents of a rare disease child. Looking back on it now and having honest conversations with you about it, I now see how much you had to push through to put on a brave face for me and … Continue reading A letter to my parents from your rare daughter