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Faces of Liver Disease

I AM THE FACE OF ORNITHINE TRANSCARBAMYLASE (OTC) Deficiency – AIDEN SIMMS

3 and a half years ago I was born with a rare liver disease called Ornithine Transcarbamylase (OTC) Deficiency. In simple terms, my liver was missing a very important enzyme which is needed to help my body process ammonia which is the by-product of protein. If this ammonia is not removed from the body, high levels of ammonia build up in the blood, which can travel to the brain resulting in coma, brain damage and death. This disorder occurs in about 1 in 80,000 births and is typically more common in boys whose mothers carry the gene. However, one-third of males born with this disorder have a new gene mutation, which was how I got it. For two years the disorder was managed with medication and a strict, plant-based protein diet. Even with the medicines and being watched closely by Mount Sinai’s renowned metabolic team, my ammonia levels would unpredictably spike and so it was decided that I needed a liver transplant. I underwent my first liver transplant on June 5, 2013, but due to complications within the first six weeks, three months later, I received a second liver on September 1, 2013. I am happy to say that I am doing well today. I was able to participate in this year’s Liver Life Walk NYC with Mount Sinai which was awesome. I was able to go to Camp Sunshine this summer which provides a free camp experience to children with life-threatening illnesses as well as parents and caregivers. I got to do water activities, arts & crafts, story time and had so much fun just running around with the other kids. Also, for the first time, I am able attend school and make friends just like my big brother Simeon. I am very grateful to the donor families for giving me a chance at a better life. I would also like to thank all the supporters of Team Aiden.


I AM THE FACE OF WILSON'S DISEASE AND LIVER TRANSPLANT - SHARI SCHNALL

Months before my October 2005 wedding, a pain in my abdomen advanced so rapidly over a week, it caused me to collapse. My body had shut down; my family was told I’d need a liver transplant to survive. For six weeks, I was in a hospital bed on machines that performed the jobs my organs couldn't, keeping me alive until an organ was matched. Thanks to the selfless decision of a family, miraculously, I was given a second chance. A rare genetic disease (affecting 1 in 30,000 people) called Wilson’s disease caused my liver failure. My husband and I married as planned and 6 years to the week of my transplant, we welcomed Alexis Nadia, named in honor of my donor. I am forever grateful to my donor, her family, and the transplant team at NYU Langone for taking amazing care of me and giving me two gifts of life!


I AM THE FACE OF AUTOIMMUNE HEPATITIS - GARY EGAN

It was into my second year of marriage, in September 2002, that I began to get sick. My symptoms started with swelling and soreness in my lower right abdomen.. I was hospitalized in LIJ in January 2003 for a week, and immediately transferred to BIMC, where I remained until May. They were very dark days, and I spent five months transferring in and out of the ICU. In May, I was recommended to Dr. Hillel Tobias and Dr. Lewis Teperman and transferred from BMIC to NYU Langone Medical Center. After tests, it was diagnosed that I had Autoimmune Hepatitis (a chronic disease in which the body’s immune system attacks the liver and causes inflammation and liver damage). It was determined in mid-May that a liver transplant was imminent. Also at this time, it was found out that with a B-positive blood type, my best chance for survival would be a living donor transplant, and my chances of survival very slim. My brother Jonathan was a perfect match. The surgery was set for September 11, 2003. As the time drew closer, my health continued to decline, and my contraction of pneumonia the Friday before the surgery seemed devastating. Dr. Teperman and the transplant team realized that the window was closing and the necessity of the transplant was vital. After a sixteen hour surgery on that fateful day, we were both taken up to the ICU at which point I was taken down to the OR again for another three hour surgery. It wasn’t until five days later, when I woke up, we realized the transplant had been a complete success. I had always felt so secure and safe in Dr. Teperman’s hands, and it was because of him that I never had a doubt in my mind……and I am here today feeling healthier than I’ve ever felt in my life, and with such a long list of people to thank.


I AM THE FACE OF BILIARY ATRESIA - DOMENIC FRAPPOLLI

When I was born I was diagnosed with Biliary Atresia. For the next decade of my life I was in and out of the hospital plagued by jaundice and other complications from my disease. However, as I continued to grow up, I became healthier and doctor visits were less frequent. For most of my high school career my liver disease didn’t inhibit me; I was able to play sports, hang out with my peers, and succeed academically. Two years ago, I went across the country to attend Pepperdine University. Then, I spent this past year studying aboard in Switzerland and traveling all across Europe. Thanks to the support from my family, friends, and doctors, I have accomplished things I never dreamed I would or could. I still have not gotten a liver transplant and I hope I never will.


I AM THE FACE OF OF PRIMARY SCLEROSING CHOLANGITIS (PSC) AND LIVER TRANSPLANT - MICHAEL KERR

I was diagnosed with ulcerative colitis in 1988. Doctors were able to keep my symptoms under control for many years with medication and surgical procedures. A routine blood test in 2003 turned up a new complication of the colitis: primary sclerosing cholangitis (PSC). I learned that the ducts from the liver that deliver bile — a digestive fluid — to the intestines had become damaged. There was a good possibility my liver would eventually fail and I would need a transplant. My doctor put me on the national organ transplant waiting list. Then, in September 2008, I had a gall bladder attack. Though my doctors managed to get it under control, I was told that another attack would seriously jeopardize my life given my quickly deteriorating liver. I was moved up the transplant list. My two son’s volunteered too but they were rejected as candidates. My wife, Susie, stepped forward as a potential live donor. On December 15, 2008 we received the call that Susie was accepted as my live donor. We were given the transplant date of January 20, 2009. The same day as President Obama’s inauguration. On December 28 in the middle of the night we were awakened by a phone call. I was hoping this day would come. It was the hospital. A cadaver liver was available for me. I was so thankful. Susie would not have to go through life threatening surgery just to save my life. Susie might have been half asleep when the call came but when I told her of the offer she said “if anyone is going to have a piece of themselves inside you it’s going to be me, give that liver to the next person on the transplant list.” Susie saved my life and the life of a second person who might not have gotten a liver.

On January 20, 2009 Susan and I went into surgery. The procedures were successful and both of us went home in about half of the expected recovery time. In a few months, I was back to my regular working routine—even playing golf. Susan’s full recovery was even faster! I am proud and honored to be an American Liver Foundation supporter. For me this is a life-long commitment. ALF was and will continue to be a life -saving group for me and hopefully for many others.


I AM THE FACE OF OF PRIMARY SCLEROSING CHOLANGITIS (PSC) - YANNAI SEGAL

When I was 11, I was diagnosed with PSC and told I'd one day need a transplant. For ten years after that diagnosis I was relatively healthy but still listed for a transplant. As time passed and I grew up, the thought and worry of a transplant became less compelling. My body felt fine and my mind fell into the trap of thinking that's how my condition would remain. I never let my liver disease get in my way and was married ten years later to my high-school sweetheart. Unfortunately, in 2008, my condition quickly deteriorated and the need for a transplant became much more acute. In the span of three months at the end of that year, I was hospitalized four times and turned jaundice and weak. To complicate matters, my wife and I found out we were pregnant with twins due January 2010. Our joy and excitement were dulled by the fact that we knew I needed a life-saving transplant. On September 16th, 2009 a wonderful family decided to give the gift of life and donate a liver to me. It's a gift I thank them for every day. Three months later, my wife and I had a beautiful boy and girl and a happy, healthy family.


I AM THE FACE OF AUTOIMMUNE HEPATITIS- SUSANNAH KATZ

My journey with liver disease began in 2009, when I was 12 years old. After being rushed to the ER due to burst esophageal varices, doctors were shocked to learn that my liver was dangerously close to failure. Luckily, the doctors were able to save my liver, sparing me the need to undergo a liver transplant. After a liver biopsy and many blood tests, the doctors confirmed their suspicions that I had Autoimmune Hepatitis. I was discharged after 6 days in the hospital with a heavy medication regimen. After a few months, the doctors learned that the immunosuppressant medication was barely doing any good, and they had to immediately switch me to a different immunosuppressant, which did work properly. I made a full recovery, and while I will most likely have to take medication for the rest of my life, I lead a completely normal life. My experience with liver disease inspired me to want to help others suffering from liver disease, and this year I spend a fabulous summer interning for the American Liver Foundation.


I AM THE FACE OF BILIARY ATRESIA- JAX SCHINDLER

I was born with biliary atresia, a liver disease that occurs because there is a blockage in the ducts that carry bile from the liver to the gallbladder. My parents were told that I would eventually need a liver transplant to live. At 6 weeks of age, I underwent an operation to delay the imminent damage to my liver. After the failure of this operation, my mom, Heather, was tested to see if she could be a living donor, but the doctors said they could only use her liver as a last resort. I was put on the donor list, and, thanks to another family’s heroic decision to donate their loved one’s organs, I received my new liver at Mt. Sinai Hospital when I was 6 months old. While I still need to go to the doctor often and have to be careful, I am healthy and just started 1st grade!


Page updated: October 20th, 2014