HDLS

I have a family member that has been diagnosed with HDLS. Has anyone heard of this disease? She is 39 years old and has 2 children. Our family went for genetic testing in 2006. The Mayo Clinic is who diagnosed her with the disease. She is the 5th person to have this in our family. They are trying to isolate the gene that causes HDLS. We are told that this disease is easily misdiagnosed.This is a rare autosomal dominant disorder. At least now we know what it is. My heart breaks for her family. Her mother took care of her father which lost his battle in 2005, and now she is taking care of her daughter. She needs our love and support and most certainly our prayers.