Faces of Fibrolamellar

The purpose of this section is to share the journeys of patients and families affected by fibrolamellar.  These stories are written by patients and families in their own words. Click on each photo for that patient’s story. Some of these families are willing to speak directly with other patients and families. Contact Lynn O’Malley at …

Read moreFaces of Fibrolamellar

Ben

Diagnosed Feb 2019, age 19 I’m 20 years old and live in Wisconsin with my parents Jennifer & Daniel, my little sister, Eliana & our dog Lily. My older brother, Ethan & his wife & baby live nearby. I was diagnosed with Fibrolamellar Carcinoma in January of 2018, six weeks after my 19th birthday. I …

Read moreBen

Read more

Mark

Diagnosed in November 2018 at 24 years old My name is Mark Carles and I live in Staten Island, NY. I am an avid runner, foodie (but restricted to certain foods since surgery), and media artist. I graduated from Hunter College in the Spring of 2017 and went on to pursue my master’s in Integrated …

Read moreMark

Read more

Thomas

Diagnosed in 1981 at 26 years old Liver Transplant surgery in 1981 I came down with FHC myself, probably before most of you were born. It was diagnosed, on July 10, 1981, by the late, Dr. Thomas E. Starzl. I’m sure many of you have heard of him as he is known as the “father …

Read moreThomas

Read more

Chris

In January of 2014 I got hurt playing soccer.  I immediately felt like something wasn’t right, but was not in significant pain.  As I was driving home from the facility, I started to feel nauseated.  I called in sick to work the next day and, since the pain was bearable, tried to sleep it off.  …

Read moreChris

Read more

Allyse

Diagnosed in May 2017 at 20 years old My name is Allyse, and when I was 20 years old when I was diagnosed. I have lived in St. Joseph, Michigan all my life; I have a single mom and an older brother; I graduated from high school in 2014, and will be graduating Valparaiso University …

Read moreAllyse

Read more

Mandy

In March 2016, I had been having severe abdominal pain for at least 3-4 days prior to going to the ER. The doctor ordered a CT to check for appendicitis, and then ended up diagnosing diverticulitis (a intestinal tract infection that young people aren’t supposed to get). He said he would prescribe antibiotics and then …

Read moreMandy

Read more

David

Hello, my name is David and I am 36 years old. I was first diagnosed when I was 22 years old. I live in Olympia Washington with my beautiful wife Kristine, two wonderful crazy kids. One, Emilee who is 2 and Matthew who just turned 5. I work for Costco Wholesale and have since I …

Read moreDavid

Read more

Jess

Jess was so excited about her first overseas trip to Europe and Egypt in July of 2009.  However, it was on that trip she experienced back pain which caused her to report to an emergency ward in a hospital in London.  After three hours, Jess and her friends gave up waiting and attributed the pain …

Read moreJess

Read more