May, 2008
Sandra's Story
Sandra Russell is a mother of two boys, ages 22 and 18. It's no wonder she's tired after raising two boys, with her husband Gordon, and co-owning and running a chain of retail stores. But her fatigue was more than the norm, says Gordon. "The first noticeable symptom was her hearing loss, and she had trouble keeping up with the busy pace of our life. I became frustrated with this as I felt like I was always having to remind her of the tasks she was supposed to be doing."
- May 27, 2008
- Comments: 1
Janis' Story
Six year old Janis enjoys life in Maine with her adoptive parents Tom and Karen Kohlmeyer.. She was born with the inability to tolerate food and ended up with a fundoplication and a G tube at the weight of just over 9 pounds. She was abandoned at the hospital but soon after embraced by a loving family.
- May 27, 2008
- Comments: 3
Too Many Doctors?
Many adults and children with mitochondrial disease find that they are overwhelmed by multiple specialists. The cardiologist, the gasteroenterologist, the endocrinologist, the neurologist as well as the pediatrician and the metabolic specialist are all expected to coordinate care for the patient and his or her confusing array of symptoms. In reality, the patient (or parent) too often becomes the gatekeeper of all the information, and are frequently frustrated by the challenges of coordinating multiple specialists.
- May 21, 2008
- Comments: 0
Cool ideas for adults and kids with heat intolerance
What is heat intolerance, dysautonomia, and why is it such an important issue for people with mitochondrial disease?
Listen to the recording of the May 2, 2008 meeting
- May 6, 2008
- Comments: 0