Patient Stories

Judy Jacobs

Judy Jacobs

Judy Jacobs is one of “the original 8” – a passionate circle of 8 people lead by the most passionate of all, the founder of GBS|CIDP Foundation International, Estelle Benson, and a group whom Dr. Arthur Asbury from the University of Pennsylvania, deemed as “the missing piece.”  This summer at the GBS|CIDP headquarters in Conshohocken, PA, Estelle and Judy reunited for the first time in several years, sharing a rare glimpse of those very early days, when the future of the foundation rose and fell on their aptitude for hope and their capacity to care for those in need.

In 1972 very little was known about GBS. “My lips and fingers started to feel numb. My husband happened to have a doctor appointment that day so I went along. My conditioned worsened throughout the day and I ended up in Pennsylvania Hospital. They really didn’t know what was wrong, but fortunately for me my son was a doctor, and was, against all odds, able to actually diagnose me over the phone. I had Guillain-Barre Syndrome,” said Judy this past summer as she visited us just prior to her 101st  birthday.

“I spent 9 months in the hospital. They had no treatment at that time, no IvIg.”  Now, more than 50 years later, Judy is the oldest known surviving GBS patient. “I remember the physical and occupational therapy was very creative. I made a cutting board! And I remember reading about Estelle and Bob and their Foundation in the newspaper.  I thought it was some sort of support group so I contacted them. I quickly realized, it was much, much more.” A young man visited Judy in the hospital. “He was in high school and he had GBS.” Judy was struck by how difficult it must be to watch her and others suffer with no real way of knowing what the future may bring. She was moved by how meaningful this visit became to her.

Although Judy’s health was improving day by day, she was not progressing swiftly enough to attend her own daughter’s wedding. “So they decided to bring the wedding to me! They got married in the chapel at the hospital.” Although Judy had the correct diagnosis and the love and support of family, her empathy for those in the same condition “lying in a bed feeling like no one cares,” grew and grew. She wanted to help. In fact, she needed to.

“I joined Estelle and Bob and their mission. My first task was to be in charge of the tribute card program, right there at Estelle’s kitchen table.” But it didn’t end there. Judy would become one of the most influential voices in the community as well as being the first official “GBS hospital patient visitor”, and a member of the GBS|CIDP board of directors. “It is a deep spiritual journey to have your life derailed. In some ways what started as handicap for me, has brought me many friends and great pleasure too.”


Postscript: We are sad to inform that Judy passed away on January 3, 2019. Please join us in offering condolences to her family and friends.