- CASE FILE
My sister has Classical Type Ehlers Danlos Syndrome & after a recent MRI was diagnosed w/ white matter disease. She’s only 38. Need answers.
ABOUT THIS CASE FILE
My sister has been severely ill for over a decade. She has not been able to work, lives with my parents and receives disability. Although diagnosed with EDS and receiving a cervical fusion several years ago; she has gotten progressively worse. To add insult to injury, the symptoms keep changing. Dramatic weight loss caused by Malabsorption and painfully slow digestion. Something doctors call transient states of awareness and memory problems that lead to periods of confusion where she isn’t oriented to place or time. She recently had a MRI that showed white matter abnormalities called white matter disease. Her muscles have wasted away inexplicably which makes it extraordinarily difficult for her to do daily activities many of us take for granted-laundry, filling a prescription at a local pharmacy, getting groceries.
The doctors have done genetic testing, additional MRIs, stress test but no one knows why she’s getting worse and why so many different systems within the body are affected.
We need help. She cannot lose anymore weight. I need my sister. Please help our family.