It is seen in one in 3 thousand people… He was living with a tumor weighing 20 kilos.

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The 30-year-old woman, who suffered from an extremely rare disease, was living with a 20-pound tumor. The young woman, who was not taken into surgery for years because it could be life-threatening, finally got rid of her tumor.

Sozcu.com.tr

Published: 10:01 – 11 April 2024 Updated: 10:03 – 11 April 2024

A woman with a rare genetic disease that affects 0.03 percent of people in the world developed a tumor on her neck as big as a backpack.

30-year-old Alexandra from Goppingen, Germany, discovered a tumor that grew over the years and eventually reached 20 kilos. The growth of the tumor, which started as a hazelnut-sized swelling on his neck in primary school, has gradually increased over the last two decades.

Alexandra had even started using a type of sling to relieve some of the weight for the tumor, which eventually reached 20 kilos.

HE WAS HAVING DIFFICULTY BREATHING AND COULD NOT WALK.

As the mass grew larger and heavier, it put pressure on Alexandra’s throat, making it difficult for her to breathe and affecting her balance.

The young woman suffers from NF-1 neurofibromatosis, which cannot be treated and some can turn into cancer. Approximately one in 3,000 people are born with NF-1 neurofibromatosis, also known as von Recklinghausen disease. This condition occurs due to a mutation in a gene called NF-1, which regulates a protein involved in cell growth and is thought to be a tumor suppressor.

In addition to growths, neurofibromatosis can also cause an abnormally large head, short stature, heart problems, seizures, and learning disabilities.

Alexandra had to be careful when moving and walking because the mass often caused her to lose balance and fall. The young woman also says she tries to stay away from crowded places because even a slight accidental blow to the tumor feels like someone is hitting her with a baseball bat.

IT MAY LEAVE A PARALYSIS, HE MAY LOST HIS LIFE FROM BLOOD LOSS

Alexandra says the tumor has robbed her of her independence, she has no job or home and lives with her family.

Alexandra avoided having it removed because she feared the tumor was attached to her spinal cord and could paralyze it. The mass also has a very large blood supply and is at risk of blood loss during surgery. And so far, six doctors have said they can’t remove the tumor.

But Alexandra, Los Angeles-based head and neck surgical oncologist Dr. Discovering Ryan Osborne. Dr. Osborne was also surprised when he saw the tumor and said he had never seen a tumor grow like this.

Dr Osborne states that because it is so large, removing the tumor would be like amputating an arm and could be life-threatening. However, during the six-hour surgery, the medical team managed to control the blood loss, leaving only a scar several centimeters long on Alexandra.

Alexandra, who returned home to Germany after 12 weeks, says: “It’s better than I ever imagined. I used to imagine what it would be like without my tumor and it’s so much better than my dreams. I’m so happy to have a normal neck.”