Suzanne Rosenthal became gravely ill with Crohn's disease as a vibrant 21-year-old, in the spring of 1956, just as she was preparing to graduate from the New York University and get married. At the time, all anyone knew about her illness, then called ileitis, was that it inflames and scars the bowel. She was not even formally diagnosed until 4 years later. Massive doses of cortisone got her illness under control at first, but Suzanne would be in and out of hospitals for the rest of her life. And for the rest of her life, she would devote her formidable energy and powers of persuasiveness to advocating for others with the disease and promoting digestive disease research.
“She had a will that I've never seen in anybody in my life,” her daughter Karen recalls. “She was driven by some godly force to live and to just laugh and enjoy every second of when she was well. She was not going to let her disease define her no matter what. She didn't talk about it, not unless you happened to be a fellow Crohn's patient, and then she would want you to feel comfortable to talk with her about it.”
To see the impact that Suzanne Rosenthal had, says Dale Dirks, President, Health and Medicine Council of Washington, all you need to do is look at the National Institutes of Health's current inflammatory bowel disease research portfolio, which stands at approximately $100 million, up from $10 million when Suzanne first started her efforts. “The bottom line is people with IBD are living a much better life these days than 35 years ago when Suzanne got started,” Dirks says. “A lot of that can be attributed to her. I don't know of anybody who would embody the word advocate as well as Suzanne.”
Suzanne Rosenthal's friends and family like to tell about how, while giving a prominent New York congresswoman a special award at her office in Washington, DC, Suzanne spoke up to ask if the congresswoman had gotten a colonoscopy yet, and got on the phone to make an appointment for her.
The organization that would become the Crohn's & Colitis Foundation of American (CCFA) got its start when Suzanne's husband Irwin, frustrated at how little was known about her illness, asked Henry D. Janowitz, MD, the chief of gastroenterology at Mount Sinai, what it would take to launch a research program. At least $25,000 a year, Dr. Janowitz said. Irwin took up the challenge to raise that money and founded the Foundation for Research in Ileitis with Dr. Janowitz as its medical director in 1965. The following year, Mount Sinai began the research program. The Rosenthal's kitchen table was the administrative office; later, the office moved to their dining room table.
Over the following decades, while battling Crohn's, Suzanne Rosenthal raised funds for the organization and traveled throughout the East Coast to help launch local chapters. She created the committee that would lobby Congress for funds for inflammatory bowel disease research, eventually orchestrating the founding of the Digestive Disease National Coalition (DDNC), a coalition of more than 30 patient advocacy and professional groups dedicated to increasing awareness of and promoting research on digestive disease. Suzanne also organized the first support groups for patients with inflammatory bowel disease, which initially were held in the Rosenthal's basement. These groups served as the model for the more than 300 support groups that CCFA's 40 local chapters now hold every year.
Suzanne Rosenthal would take calls at any time of the day or night to help other people suffering from the disease, her daughters recall. “She loved listening to people's motivational stories, whatever it was, that they rose above their disease and never let it define them.” Robin says.
Suzanne's daughters remember how their mother kindly but firmly acted as a patient advocate during her own hospitalizations, hoping that what she taught the doctors and nurses treating her would benefit patients in the future. “What she felt was urgent was doctors, nurses, anybody in the hospital understanding patient advocacy, that was her number one thing,” Karen says. “She would try to teach them nicely, and if they were rushing out or they were too abrupt with her she would stop them and say ‘no, you don't treat patients that way.’ That was really critical to her, that human side.”
Basically, she was expecting of others what she expected of herself, Karen recalls: “Be on top of your game at all times, and do it with a smile, and always with kindness.”
Says Robin: “I thought she was a renaissance woman because she loved opera, she loved art, she loved information, she read, she lived hundreds of lives in her 78 years. There was not a day that she did not get the most she could out of that day.”
During her mother's last hospitalization, Karen visited the Bikur cholim room, a special room set aside for prayer for the sick, and met a woman named Esther. When Esther heard Karen's mother had Crohn's, she told her she was diagnosed with Crohn's herself in 1979, when she was pregnant with her sixth child. Her doctor gave her a pamphlet with a story about a young couple who were about to marry and had to put off the wedding because the woman became ill. “This woman, she gave me the will to live,” Esther told Karen. “I didn't want to live, I was sick and I didn't know what it was going to take.” Karen told her that the couple in the pamphlet were her parents, and asked Esther to come upstairs and tell her mother her story. And she did, telling Suzanne, who lay in a medically induced coma: “Mrs. Rosenthal, I want you to know it's because of you I am here today, and I have 16 children because of you.” Just moments later, Suzanne passed away.
And Karen remembers thinking that Esther's story was a message from her mother telling her that her time had come and her purpose on this earth had been fulfilled and it was OK to let her go. “I was meant to hear that story. It was a gift from my Mom to Robin and me. I was meant to hear it, she was meant to speak to my mom. We had a mother, she was an angel, she lived her life in service of others. How many children can be honored to have such a loving, giving mom? How did she have the capacity to love us so much and so many hundreds of thousands of others too?”
Says Robin: “She was an angel that taught me unconditional love, devotion, grace, selflessness, warmth, and the ability to make people feel special.”