Alexa Lardieri US Health Deputy Editor Dailymail.Com
03:01 April 11, 2024, updated 04:52 April 11, 2024
A woman with a rare genetic disease that affects 0.03 percent of the world’s population has developed a tumor so large it feels like a “backpack around my neck.”
Alexandra, 30, from Göppingen, Germany, said the benign mass was very large, making up 20 percent of her body weight and nearly half her height.
The growth has gradually expanded over the past 20 years, and when he was in elementary school he started developing “hazelnut-sized” bumps on his neck.
By the time she was 15, it had grown to the size of a grapefruit.
Well, it’s very big, so It hangs from Alexandra’s neck to the top of her thighs and is estimated to weigh 20 pounds.
It was very heavy on her back so we created a sling to carry the tumor to take some of the weight off.
As the mass grows and becomes heavier, the pressure on Alexandra’s throat increases, making it difficult to breathe and affecting her sense of balance.
This young woman has a rare disease called NF-1 neurofibromatosis. This disease is incurable and causes tumors to develop throughout the body, some of which may develop into cancer.
she said on the latest episode of TLC. Take My Tumor: “That weight is like carrying a backpack that you can’t carry on your shoulders. It’s only on your neck.
Approximately 1 in 3,000 people are born with NF-1 neurofibromatosis, also known as von Recklinghausen disease.
The condition is caused by mutations in a gene called NF-1, which regulates a protein involved in cell proliferation and thought to be a tumor suppressor.
In addition to growth, neurofibromatosis can cause an abnormally large head, short stature, heart problems, seizures, and learning disabilities.
Alexandra has the same disease as the patient featured on last week’s episode of TLC’s “Shamaine Sahadeo.”
The 42-year-old from Trinidad had thousands of tumors all over her body, including her scalp, inside her mouth, all over her face, arms, legs, buttocks, breasts and genital area.
The growth left her unable to breathe through her nose, walk more than a few steps, or eat properly.
Although the disease can be passed down through families, about 30 to 50 percent of people with the disease have no family history.
Alexandra must be Be careful when moving and walking, as lumps often cause them to lose balance and fall, which can damage growth.
She said she tries to avoid crowded places because even the slightest accidental bump to the tumor feels like someone “hitting her with a baseball bat.”
Her father often walks behind her to protect her butt, and she has difficulty sitting, sleeping, and getting dressed.
Alexandra said the tumor had affected her independence. She has no job or home and lives with her parents.
She wants to wear dresses and necklaces, but she has to wear big clothes to hide her volume, and her near-anagen skin is very sensitive, so jewelry hurts her neck.
Alexandra has avoided having the tumor removed because it is attached to her spinal cord and removing it could leave her paralyzed. This mass also has a very large blood supply, putting it at risk of life-threatening blood loss during surgery.
Six doctors told her that removal was impossible.
she said: “I thought it was hopeless. There was no one to help me.”
But Alexandra discovered Dr. Ryan Osborn, a Los Angeles-based head and neck oncologic surgeon and director of the Osborn Head and Neck Institute. She and her parents traveled 5,700 miles in hopes he would find answers.
“For me, it’s like I wanted to hear the doctor say, ‘I think we can help you. I think we can remove the tumor after surgery,'” Alexandra said.
“I found hope again.”
Dr. Osborne called her growth “cape” and said “I’ve never seen it before.” [a tumor] It grows like this. ”
The surgeon said the tumor had grown so large that Alexandra could not delay the operation any longer, but added that the large blood supply to the tumor made the operation risky.
Dr Osborne said the tumor was so large that removing it would be like amputating an arm and could lead to fatal blood loss.
To address this, Dr. Osborn and his team suspended the tumor over the operating table and applied a tourniquet to cut off blood flow.
Throughout the six-hour surgery, the medical team was able to control blood loss and remove the entire tumor, leaving Alexandra with a scar just a few inches long.
Twelve weeks later, Alexandra returned to Germany and went shopping for a dress she could wear now that she was free from overwhelming growth.
she said: “I feel very happy now. It’s better than I ever imagined. I tried to imagine what it would be like without the tumor, but it’s much better than in my dreams. I have a normal neck. I’m very happy.
She said she immediately felt better once she lost the weight, adding that she now feels beautiful and “like a princess.”
The same episode of TLC’s new show also featured Claudia, a 50-year-old from Houston, Texas, who has had an “avocado” growing on her butt for more than 10 years.
The grocery store worker first noticed her butt growing about 10 years ago, when it was about the size of a golf ball.
Claudia said it tasted like rotten avocado. It feels like it’s soft and has a hard “hole” in the center.
Claudia said that even though the lump had grown over the years, she was afraid that doctors would find it and had avoided getting it checked out, fearing it might be cancerous.
Claudia’s growth is a mass of soft tissue. These common lumps are cell proliferations that can appear anywhere in the body.
They can grow slowly or quickly, be round, oval, or sausage-shaped, and are usually non-cancerous about 99% of the time.
The causes vary, but there is evidence to suggest that some genetic disorders and mutations predispose the population to the disease.
There is often no clear cause, but injuries, infections, and lifestyle factors can also be the cause.
Some benign tumors may not need to be removed, but larger or painful tumors can be removed with surgery. Not all soft tissue masses cause pain, and it usually depends on its location.
Since Claudia is on her butt, she has difficulty sitting, driving, and getting dressed.
She told the TLC show that she had to buy larger-sized clothes to fit her body and readjust the stretch of her underwear and pants to get comfortable.
Claudia works two jobs to distract herself from her growth, but as her family and friends increasingly insist on getting her checked out, Claudia discovers Dr. Jason Cohen, an oncologic surgeon in Los Angeles. did.
She said, “This has been a roller coaster of emotions for quite some time. I want my life and health back.”
Claudia traveled to California to meet with Dr. Cohen, who told her that the soft tissue mass was in its usual location, could cause problems with healing, and had up to a 30 percent chance of postoperative complications.
However, he was still confident that it could be safely removed.
The surgeon said, “Patients come to me because I’m cautious, but I’m confident.” I’m not going to abandon you. I’ll be there for you and together we’ll figure out what’s going on. ”
After the lump is removed, it will be sent for tests to see if it is cancerous.
Claudia was hopeful that Dr. Cohen would remove it, but she was still nervous about the anesthesia and recovery process.
However, doctors were able to remove the entire tumor in just one hour. Because it was deeper than expected, it was described as an “ice cream cone,” and subsequent tests revealed that it was benign.
Claudia, who returned to Texas four weeks later, said her life was “hugely better” now that Mass was gone. Her healing has been better than she expected, she has no pain when sitting, driving or dressing, and she is now able to buy smaller clothes.
She said: “Without the growth, I feel much better about myself. That was a big issue for me.”
Although she’s not ready to date yet, Claudia is excited about the future now that she no longer has to be embarrassed about her lump.
she said: “You don’t have to worry about anything else. Just get on with your life.”
Take My Tumor It airs Wednesdays at 10/9c on TLC.
