Craig Andrianos was the featured speaker for the June 2014 meeting of the Central NY Chapter of the GBS/CIDP Foundation. Craig is a CIDP patient and a college student/athlete at the State University of New York at Brockport. He spoke about his experience, symptoms, staying positive, dealing with life changes and the value of a vegan diet to recovery and overall health. He hosts a number of YouTube videos on the subject.
Contact for the chapter is my mom, a recovering GBS patient who has made a significant recovery from a point of near complete paralysis and four weeks in intubation followed by 104 days of inpatient rehabilitation. She taught herself to walk, talk, get dressed and eat all over again. When she was well enough to travel she became a certified GBS/CIDP Foundation counselor. She visits and assists other patients afflicted with this rare and often unrecognized condition around Central New York. Her contact info is [email protected]. Meetings are twice per year at the Town of Manlius Library.
Guillain-Barré Syndrome is a medical condition in which your immune system mistakes your nervous system for a foreign body and attacks it. It strips the peripheral nervous system of the myelin sheathing that coat nerves, exposing them and subjecting them to often painful sensation. GBS is an acute event which can last a few weeks to a few months with full recovery sometimes taking years. Symptoms cover a wide range from weakness in extremities to complete paralysis resulting in a life threatening emergency.
CIDP, or chronic inflammatory demyelinating polyneuropathy, is chronic form of the condition.
GBS/CIDP are often misdiagnosed and is rare enough that knowledge of the affliction when encountered by medical staff is not a guarantee.
There is no known cause or cure other than time. Myelin sheathing will grow back in most cases, and most patients recovery fully or nearly fully. However, it is not uncommon to have lingering fatigue, burning sensations especially in the feet and hands, weakness and limited physical endurance. In some cases the damage to the nervous system is permanent.
Anyone can get this rare affliction. It is suspected that several things can trigger GBS/CIDP including a strange reaction to a vaccine, introduction of a virus, or as a misfire reaction to body trauma including major surgery.
Rate of incident is about 1 in 100,000. Mortality is less than 5% and usually in patients with underlying medical conditions which GBS exacerbates.
For more information please click here: http://www.gbs-cidp.org/