The story of Cynthia
I have a disease called Caroli disease. Since being told in 2006 that I have it and surgery in 2006. I learned in February 2013 I have another rare disease and now wonder if there could be a third. I wish more Drs. would consider referring to genetic Dr. Can’t seem to be able to get anywhere with the Drs. So now just tell them my symptoms and let it go. Maybe raising awareness to Drs. and how they can help you with the genetics part. Hopefully they will understand what is actually needed to help with rare diseases with genetics