The story of Jim
My name is Jim and my wife is Rachel and we were Newlyweds in November of 1973 when I was hit hard with an autoimmune attack on my peripheral nerves called Guillain Barre Syndrome or GBS. Within days of my diagnosis I was totally paralyzed and on life support and a ventilator and a tracheotomy in Northern New Jersey. I was unable to move in any way and unable to communicate my condition or thoughts or needs in any way. My wife Rachel was my angel and took over my life. We married at a very young age, I was 21 and Rachel was 19 at the time. We were on our own for the first time in our lives and we had never had to deal with a major crisis in our lives up to this point in our lives. I had no choice as I was in a bed and unable to do anything. Rachel was now dealing with seven doctors and a hospital that was dealing with a very rare disease at the age of 19. While I was being kept alive we had to wait for the damaged myelin that covers my nerves to regenerate. This regeneration is a very slow process and we just had to wait it out. Finally on Christmas Eve, my pinkie moved. This was the beginning of the recovery process that took a number of months. I recovered fully and went on to a full life and I am now retired and Rachel and I have four grandchildren and three daughters. GBS is one of hundreds of rare diseases that most of us are unaware of. We see stories on TV about people who have these rare disease and we feel bad for a few minutes and move on. It is rare until it happens to you then you learn all about the rare disease that you have. Please support Rare Disease Day on February 28th.
Find others with GBS/CIDP on RareConnect, the online platform for people affected by rare disease