This article was originally published by GE Healthcare in 2009.
Up until 1998, life had its normal ups and downs for Deb Sobel, who spoke often with her sister, Sarah Jane Kiley, via telephone. They talked about everything from family to politics to business and real estate. However, that was the year their lives - and their conversations - would change forever.
Sarah was diagnosed via a biopsy with Primary Biliary Cirrhosis (PBC)*, a rare autoimmune liver disease. Three months after Sarah's diagnosis, Deb also had a biopsy and was diagnosed with the same disease.
Deciding to seek a second opinion, Deb and Sarah sought out Dr. Marshall Kaplan at New England Medical Center in Boston. The doctor confirmed the sisters' diagnoses, but he also did something that no other doctor had done: He encouraged them to be patient advocates for the rare, little-known disease.
Advocating for change
Sarah needed no further encouragement, becoming very involved in the PBC support network. She also became a strong advocate for the PBCers organization and the American Liver Foundation, helping hundreds to find the healthcare she so strongly believed they deserved.
"Sarah ran with it and became a full-fledged advocate for helping others with the disease," explains Deb. "She treated each person she encountered as family."
After eight years of campaigning for PBC patient rights, Sarah's condition had become so advanced that she underwent a liver transplant at the Cleveland Clinic in 2006. Unfortunately, Sarah developed an infection called pseudomonas, a bacteria, and the transplant was not successful. While the chances of survival are slim when PBC and infection "overlap," doctors were determined to perform a second transplant. It was unsuccessful, and on June 29, 2006, Sarah lost her battle with PBC at only 47 years of age.
Before Sarah died, Deb promised that her sister's story would help others. "Sarah was a huge patient advocate up until her last breath," remembers Deb. "She still holds the torch. Sarah is not able to communicate anymore, so I am continuing her work and giving her a voice."
Hope on the horizon
While watching CNN one day, Deb saw a story about Mayo Clinical trials of magnetic resonance elastography (MRE) - a technology much like a magnetic resonance imaging (MRI) scan that uses a drum over the area to be examined. The drum generates sound waves that move through stiff and supple tissue at different rates. A computer analyzes the difference, showing what's healthy and what's not on a color scale.
Deb decided to fight for the opportunity to access MRE. After speaking with Dr. Jayant Talwalkar at the Mayo Clinic and telling him about her sister Sarah, Dr. Talwalkar invited Deb to come in for an MRE. He even wrote letters to her insurance company to get partial coverage for the test, as it was still not FDA cleared. In 2007, Deb had the MRE and saw the condition of her liver for the first time in almost 10 years she had been battling the disease.
"Seeing my liver and the state of disease for the first time was a very powerful, emotional moment - it left me speechless," recalls Deb. "MRE painted a true picture of the PBC progression. I used to be mad at my liver, but then I felt bad for it and decided to protect and take care of it as much as possible."
While PBC can not be reversed, Deb feels strongly that MRE will help her manage the disease and she is thankful that MRE enabled her doctors to pinpoint the true state of the PBC - as biopsies, she says, can be hit or miss. Knowing exactly what is going on with her body is empowering.
"There are 100,000 women in the United States diagnosed with PBC who could benefit greatly from the MRE technology. It might not have saved Sarah's life, but it could have helped," maintains Deb. "I want to carry on the advocacy started by my sister to help women get this test."
Deb's passion is further fueled by Sarah's two daughters who could carry a hereditary component (the disease has a 95% female hereditary component). She would like to ensure that her nieces can have the test to track any possibility of the disease and if necessary, begin a management plan.
Sarah and Deb's efforts will be rewarded soon. As mentioned on the previous pages, GE Healthcare is collaborating with the Mayo Clinic to be the first to bring MRE to hospitals and clinics, commercially introduced as MR-Touch.
"I think it's phenomenal that patients will now have the opportunity to manage their PBC," continues Deb. "We need to get the word out that GE is making the test possible nationwide, and I hope all hospitals and clinics make the decision to get it."
For more information about PBC and MRE, and to find out how you can help spread the word, visit the following sites:
*note: PBC is now more commonly referred to as Primary Biliary Cholangitis. September is PBC Month, where advocates, patients and loved ones can learn more about this rare autoimmune disease.
