Patient Stories

Meet GBS member Nancy  DiSalvo, a tireless international volunteer for the GBS|CIDP community, and learn why she feels “each small accomplishment is a major victory.” We sat down with Nancy at our 2017 International Liaison Meeting in Amsterdam. Here’s what she shared about her experience with both GBS, and CIDP.

The morning of November 8, 1990 as I went to get out of bed I fell down and thought, “I must be really sleepy today”; afterwards I had difficulty holding the toothbrush, comb, etc. What I had managed to do naturally the day before had become impossible. The fear was overwhelming. The ER diagnosis: Guillain-Barré Syndrome.  I was 20 years old and I cried for two whole days, completely paralyzed. However, I could talk, feel, and understand. When I was told that I would heal, I started to fight. The ventilator was always at hand in the corner of my room, looking at me in the darkness of the night. Fortunately, it was never needed. After three months in the hospital with nerve pain, fear and hope – I found myself. I discovered the unconditional love of family and true friends. I could not have overcome such suffering without their constant support and continuous presence. I rediscovered God. I found an inner strength that was unknown to me, which gave me the courage to accept as well as the strength to go on. I had to learn to move my thumb, to sit, walk, to breathe. And each breath was intense and full of hope; every movement, a conquest; every step a journey. The “first steps” without a walker took place in April 1991, five months after the advent of this stranger in my life. I still remember the excitement and happiness, like a toddler taking his first steps.

Later on there were several new “conquests”: the stairs, the writing, the keyboard of a computer. Every moment was a victory. On May 14 1992, I had a GBS “recurrence”. I remember being in that same hospital, that same room, and not being able to fall asleep fearing I would wake up tetraplegic like two years earlier. Luckily, it was not as devastating. I regained control of my life and made some accomplishments. I traveled and I danced and I took some falls. I matured with the awareness of being lucky knowing my limit and enjoying life.

Brief flashback: I lived in the U.S. from age 4 to 13, growing up in New Castle Pennsylvania. My father went to the U.S. as an immigrant in 1974; when my parents decided to return to Italy in 1983, me and my younger sister were obliged as minors, while our older brother and sister (both American citizens), decided to stay. It was a devastating separation, both from my siblings and from a country I, thought was my home.

In September 1997, I finally went back “home” to visit my family in the U.S., after my recovery from GBS. It was another goal conquered. During my visit, my brother contacted the Cleveland Clinic asking about GBS. After a couple of days, I received an envelope full of brochures and contacts directly from the Foundation. From that moment on I would receive my Foundation envelope directly in Italy. I felt that I wasn’t alone and all the stories, the pictures, the Symposium information, enriched me and gave me the will to go on. Robert and Estelle Benson are my heroes. I started to read about CIDP through these newsletters, and watched as it has become the global GBS|CIDP Foundation it is today.

Then in my life came along CIDP (2006), which answered many questions regarding my weakness and continuous falls. All along, it was not a total surprise. I started to receive IVIG and corticosteroids. I took many medical exams: MRI, EMG, EP, and Sural Nerve Biopsy. After 10 days I received the final diagnosis: CIDP. It took me years to understand that I was not having GBS residuals. I have been on IVIG for 12 years and just this January, 2018 I decided to make a change and started Hizentra SCIg. I can’t run, I can’t dance and I can’t jump and I can walk but for no longer than ½ km. But I can do many other things and my goal is to continue to work as I have always done, since 1990. I have only stopped when my body would not respond. My motto is that I will never stop as long as these legs keep on walking and this heart keeps on beating. Our perspective of life is different compared to those who are “healthy”, each small accomplishment is a major victory.

Being a part of the Foundation as a patient is fundamental and enriching; as an International Liaison is encouraging and inspiring. I am forever grateful.