My name is Raquel. I’m 43 years old and was diagnosed with FAP in 1987. I have taken a great deal of time to compose my story, because with in my family having FAP has been treated like a secret.
As a child I felt there was something going on with some of my family members heath, but couldn’t get any straight answers about why my family would be in and out of the hospital. My grandfather, my father, aunt and uncle always talked about their health issues in a hushed manner. I felt the tension but was at a loss what their condition was and why it seemed to be a subject that was held under cover.
I was around fourteen when I began to feel ill and now looking back I recognize it was my body telling me something was not working correctly. My father was married to a difficult abusive woman and made it a challenge to get my needs met. I began to miss a lot of school because of stomachaches and feeling lethargic. I wanted to just be in bed all day curled up into a ball. My stepmother would tell my dad I just wanted to quit school and so many times I pushed myself to go even when I was having what would be classic symptoms of FAP.
My two best friends took me to the clinic one day to see if the doctors could examine me to help me. If it were not for Susan and Cheryl I may not be here today. Hard to say but I firmly believe their interest in my health really made it possible to be treated.
Although, my appointment did not give me any direct answers it did prove there was a problem with my blood work and also after doing a pap smear raised concerns about some large lumps on the walls of my female area. The doctor suggested I might have had a t shaped uterus, based on her knowledge that in the late 60’s or early 70’s pregnant women that were at risk for miscarriages were given a drug to prevent this from happening.
I kept thinking of all the bits and pieces of conversations my family had that seemed like they were in some type of code. I felt the answers lied within the family. I skipped school to go to the clinic so by the time I got home I was busted for not being where I should have been and missing curfew. I just bawled and told my dad where I was and that I thought I was dying. He stopped yelling and began to cry and said, “I never though this would happen to you.” I was a bit confused and angry as he tried to explain how he was diagnosed with FAP at 18.
The next day he had an appointment made. ASAP. Doctor Capek was the family GI and well I was not even thrilled about the type of examination that I was put though. After he finished he pulled my dad and I into his office and was certain I had FAP. He scheduled me for a procedure to biopsy the polyps and then also a surgery to remove part of the large intestines. He said I had polyps from the size of grains of sand to the size of silver dollars in the thousands. None of this still made any sense to me, and the way my family behaved made me feel like it was a death sentence.
On top of that my stepmother didn’t want anyone to know that my friends and I were the reason there was some type of discovery to my illness. I believe in my heart she did not want to face my extended family with the fact that they neglected my health problems. So she created her own accounts for how they were so concerned.
Since then like others I have had so many surgeries and numerous procedures. I have had demoid tumors removed, never had any children, and so many complications due to having a j-pouch. I have various osteomas (some have been removed), and struggle with getting doctors that are willing to keep up with surveillance throughout my body. Some doctors are firm believers that FAP/Gardner’s Syndrome doesn’t need that much tending and doesn’t cause many problems outside of the digestives system.
I have to say my greatest support has been my group of fellow friends that are dealing with FAP. It’s comforting to know others with empathy and can share information that has always proved to be helpful for me.
The angle for my story is to one, share how difficult it was and still is for my family to discuss FAP and two, press the importance of having children screened if their family history has proven to be genetic carriers of FAP. My family buried their heads in the sand and tried to as if didn’t exist.