Pt. Story - Beverly & Eli Oberlander
June 15 2010
Posted in Personal NF1 Stories
My name is Beverly Oberlander and I am the middle generation of a multi-generational NF family. I have it, my son has it, my brother, one of my two nieces, and I lost my dad to the disease in 2000. So, I have seen NF from every perspective imaginable – as a patient, a parent and a family member. The devastation this disease has wreaked on our family is significant. My dad had multiple surgeries to remove football sized tumors; my brother who has cancer is so covered with neurofibromas that doctors had a hard time finding a place to insert his port for chemotherapy. My 30 year old niece has already had a malignant tumor removed from her back. During my pregnancy, I was diagnosed with a life-threatening adrenal tumor and spent several months in the hospital. They took him a month early and I spent several days in ICU. A couple of years after that, I had a significant portion of my stomach removed because of a massive neurofibroma and at the same time, doctors found a carcinoid tumor, also related to neurofibromatosis on my liver, which they removed at the same time.
My son, who is now 23 is graduating from college with a B+ average and plans to teach elementary school. Yet he has faced his own challenges with neurofibromatosis. He had major surgery when he was 8 to remove a tumor that had eroded the bone of his eye socket and sports an ear to ear scar. His reaction to the surgery was that he got to meet Donny Osmond and got a new super Nintendo so it wasn’t so bad and thought that his reverse sideways, backwards Mohawk cut was “cool.” And it didn’t stop him from having a very nice professional acting and modeling career growing up in Chicago. He has learning disabilities, tumors up and down his spine and is in constant pain and was recently diagnosed with an aneurysm also related to the disease. But he, like the rest of us in our family, perseveres.
But now we persevere with newfound hope. I have been involved with NF groups for over 25 years, and we have come so far – the research has progressed so much. We are on the verge of major break-throughs and this is so exciting to me when I know where we were, when doctors had barely heard of NF and now we are at the stage of clinical trials, and more and more research is being done, and more and more good, solid information is being published for families, and support groups are being formed so people are not alone anymore. And that is why we all must continue to work together to fight this disease and find the treatments we all need. But we must not let ourselves be defined by it either.
And the rest of our family feels the same way, my son being the perfect example. He does not let NF rule his life, treating it the same way he does his black hair and brown eyes. Like me, he does what needs to be done when a problem occurs, but otherwise, pretty much puts NF into the background. His motto and mine is, “I am me, and I am not my disease.”
I have been involved with NF groups for over 25 years, and we have come so far – the research has progressed so much. We are on the verge of major break-throughs.
