A woman in Goppingen, Germany, has been living with a rare genetic disease that affects a small percentage of the global population. Alexandra, 30, has been grappling with a massive tumor that has grown over the past two decades, starting as a small bump and now weighing an estimated 20 pounds. The benign tumor extends from her neck down to the tops of her thighs, affecting nearly 20% of her body weight and nearly half of her height.
The tumor, a result of NF-1 neurofibromatosis, has caused Alexandra to face challenges with balance, breathing, and daily activities. The condition, which is incurable, leads to the development of growths throughout the body, with some potentially turning cancerous. Alexandra’s story was featured on TLC’s “Take My Tumor” episode, where she expressed the physical and emotional burden of carrying a tumor that felt like a heavy backpack on her neck.
NF-1 neurofibromatosis, also known as von Recklinghausen’s disease, arises from a gene mutation that affects cell growth and is linked to various health issues such as heart problems, learning disabilities, and abnormal growths. Despite the condition’s hereditary nature, a significant percentage of individuals with NF-1 do not have a family history of the disease.
Alexandra’s journey to find treatment led her to Dr. Ryan Osborne, who successfully removed the tumor after a complex and risky surgery. The procedure, lasting more than six hours, was a pivotal moment for Alexandra as she embraced life without the debilitating mass. Following the surgery, she experienced relief, joy, and a newfound sense of freedom as she shopped for dresses without the weight of the tumor overshadowing her.
In another part of the TLC episode, Claudia, a woman from Houston, Texas, shared her decade-long struggle with a growth resembling an avocado on her buttocks. Despite initial reluctance to have it checked, Claudia eventually sought help from Dr. Jason Cohen, who successfully removed the mass in a one-hour procedure. The removal marked a significant improvement in Claudia’s quality of life, eliminating pain and allowing her to confidently pursue her future without the burden of the growth.
The stories of Alexandra and Claudia shed light on the challenges faced by individuals living with rare conditions and the transformative impact of medical interventions. As they navigate their journeys to reclaim their health and well-being, their experiences serve as a testament to resilience, hope, and the importance of seeking proper medical care for uncommon health issues.