Tom's Trip to Russia To End CIDP
Organized by: Mary Sedita
Mary Sedita via Crowdrise
March 01, 2015
Tom was diagnosed in 2010 with a little known autoimmune disease called CIDP or Chronic Inflammatory Demyelinating Polyneuropathy. In a nutshell his body's immune system has started to attack the myelin sheathing or the covering of his nerves and is destroying it, leaving the nerves exposed. This in and of itself is very painful. Along with this symptom people with CIDP also suffer from a host of other ailments. Examples would be tingling, numbness, loss of deep tendon reflexes, fatigue and abnormal sensations.
Everyday life expectations become an issue as they are affected by the progression of the CIDP, I.e., grasp.... buttons on shirts, tying shoelaces, steering wheel for driving, screw drivers and other tools that require clasping and turning and changing a diaper...
Tom has not given up!! Through research and communicating we found out about HSCT and the clinical trials in Chicaco. Great place by the way with even greater people! Unfortunately he did not quite fit the criteria, we tried twice. I cannot even begin to tell you how disappointing that was. Anyhow, through the magic of social media we found Russia. We sent in paperwork and the hardworking Dr Fedorenko has agreed to see Tom.
It will be a 6 week journey that I will be joining him on. They did say in sickness and in health...