For most of us, when we go to the doctor with symptoms, we are diagnosed and treated. Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring. Then imagine, this is your child and all the specialists referred to have no answers. What if you were told this was a rare illness and no one knew how to diagnosis it? What would you do?
This is the story Heather Long is going to talk about on this week’s show. One of Heather Long’s three children (Cal) passed away in 2006 at five years old to an undiagnosed disease. Heather was told that her son’s death was likely caused by a very rare metabolic disease, and she has since focused her energies on being an advocate for patients suffering from undiagnosed and rare diseases.