- CASE FILE
My daughter has been diagnosed with Hypermobile Ehlers Danlos Syndrome, doesn't explain all of her symptoms. Need help!
ABOUT THIS CASE FILE
She has had persistent severe constipation since she was a young girl, she is now 20. Her current symptoms are: debilitating nausea and stomach pain, constant exhaustion, dizziness/fainting upon standing, extremely low blood pressure (70/53), food allergies (lime, dairy, eggs, gluten), was recently diagnosed with HEDS (Hypermobile Ehlers Danlos Syndrome) - causes subluxation of joints, headaches and joint pain. Has severe reaction to regular doses of medicines, we have learned to start with micro-doses rather than a full dose. She has been to 8+ doctors over the last 3 years: three Primary Care, two Naturopath, one Gynecologist, three Gastroenteroligist and a Clinical Geneticist. Several of the bills and treatments are not covered by insurance. She is scheduled for a tilt-table test for POTS (Postural Orthostatic Tachycardia Syndrome) in August. Not many doctors treat POTS or HEDS. We have several teaching hospitals in the Portland, Oregon area, however none seem to be interested in helping or the wait list is years long. We are even contemplating taking her to the Mayo Clinic to figure out what is going on. She is a 20 year old college student and has put a lot of her dreams on hold due to her illnesses. She is the strongest, most positive young lady but I know it wears her down and is disappointing when she sees a new doctor and they say "I have no idea" or dismiss her symptoms as "hysterical" or "female problems".