Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare neurological disorder in which there is swelling of nerve roots and destruction of the fatty protective covering (myelin sheath) over the nerves. This disorder causes weakness, paralysis and/or impairment in motor function, especially of the arms and legs (limbs). Sensory loss may also be present causing numbness, tingling, or prickling sensations. The motor and sensory impairments usually affect both sides of the body (symetrical), and the degree of severity may vary. The course of CIDP may also vary from case to case. Some affected individuals may follow a slow steady pattern of symptoms while others may have symptoms that wax and wane, with the most severe symptoms occurring after many months or a year or more. CIDP can be life-threatening when autonomic involvement is present.
More on CIDP
The clinical trial at Northwestern.
Richard K. Burt, MD (research papers, articles, videos..)
Stem Cell Transplant overview : how it works, the timeline, patient handbook
Presentation by Dr Burt (in Sydney) on the procedure and how this protocol came about : (very interesting !)
PART 1 PART 2 PART 3
capital hill briefing by dr burt and 3 auto-immune patients in march 2009
Stem Cell Video Journals and TV Casts--success stories
Northwestern patient education booklet on the stem cell transplant procedure
Article on Jennifer Osmon, 1st person to undergo the treatment, and her blog
another article on Jennifer
well documented site with videos on the procedure by Brian Tilaro
an animated visual on blood stem cells (= hematopoietic stem cells) (first part)
an NIH article on how the stem cell procedure works for autoimmune illnesses (for the scientist in you)
Helping others in need :
Robert's fundraising page : http://www.gofundme.com/Stem-Cell-Transplant-Pre-and-Post-Care
Online Support Forums :
GBS/CIDP international Forum
GBS/CIDP International Facebook Page
CIDP Facebook Group page
UK GBS/CIDP Support Group on Facebook
Alpha Lipoic Acid
exchange thread on ALA
current trial : "Lipoic Acid for Chronic Inflammatory Demyelinating Polyneuropathy A Randomized Double-Blind Placebo Controlled Pilot Study"