Leading up to National Rare Disease Day on February 29, 2016, I will present a twice weekly narrative of Warburg Micro Syndrome, symptom by symptom, and how it affects MaryEllen and Kevin.
This is our view of Warburg Micro Syndrome. If you are a doctor or parent reading this, your experience may not be exactly like ours. I present this only to educate and hopefully help other families and professionals in the medical field looking to learn more about this extremely rare genetic syndrome.
MaryEllen is 29 years old and Kevin is 28 years old. They are the oldest known people in the world with Warburg Micro Syndrome, so there will be a lot of information forthcoming.
The schedule will be as follows:
January 26, 2016 – Brain
January 28, 2016 – Eyes
February 2, 2016 – Cognitive
February 4, 2016 – Muscles, Joints
February 9, 2016 – Peripheral Neuropathy
February 11, 2016 – Osteoporosis
February 16, 2016 – Hypothalamic Hypogonadism
February 18, 2016 – Growth Failure
February 23, 2016 – Seizures
February 25, 2016 – Miscellaneous
