What the Public Should Know: From the Mother of an Undiagnosed Child

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I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We are trying IVIG treatments, and if they don’t work, we are being sent to the National Institutes of Health (NIH) for a case study. It’s been a very hard couple of years trying to explain how our child is sick and we don’t know what is wrong. I want her to be healthy and happy and to be a voice for others.

I want others to know that we don’t have answers. I want them to know that a text checking on your family is okay and to not be afraid to ask questions. However, please do not push your thoughts on what you think I need to do for my child. Help uplift and support, not judge.

The idea of health equity is important, because not everyone’s health will be the same. Times change, and so does our health. In time, maybe doctors have more insight to help kids who are rare like Sarah.

Undiagnosed Day takes place on April 29. All diseases were once undiagnosed. Join NORD as we honor the undiagnosed rare disease community throughout the month of April.