Rare disease causes woman to have tumor around neck so large it had to be carried around with a sling

A woman has opened up about having to carry her tumor around her neck because of its sheer size and weight.

A new TLC mini-series titled Take My Tumor focuses on the story of Alexandra, from Goppingen, Germany who had a 20lb (9kg) tumor which had been 'growing for over a decade'.

Alexandra's tumor grew to the size of a watermelon (TLC)

When Alexandra's tumor first started growing, it was the 'size of a hazelnut' when she was in primary school, however aged 15, it had already become the size of a grapefruit and now, it's 'as big as a watermelon'.

She suffers from a rare genetic condition called NF-1 neurofibromatosis, which causes tumors to grow along nerves. It affects one in 3,000 people.

The now 30-year-old tried to have her tumor removed, but was told doctors wouldn't 'touch it' because the surgery would be 'too risky' as a result of the 'big veins' on the tumor and fears of Alexandra 'd[ying] from blood loss' during the operation.

In a clip from the series - which also tells the story of a woman whose condition has led to thousands of growths all over her body - Alexandra can be heard telling TLC: "I just thought it's hopeless. There is nobody who can help me."

Instead, Alexandra had to adapt to life with a huge tumor. You can see how she learned to cope below:

As a result of the tumor being 'heavy and super sensitive' and Alexandra struggling to 'balance the weight' and subsequently 'risk[ing] injury every day' she used a sling to support it.

However, this solution wasn't foolproof, Alexandra revealing the sling gave her relief from the weight of her tumor, but it didn't help with her balance.

"It swings and moves every time I move, like with every step," she said.

"The tumor usually moves in another direction than the other parts of my body and that makes me fall down or lose my balance."

The skin on the tumor was also 'very thin and soft' so Alexandra sometimes ended up damaging it if she knocked into anything, which places her at risk of infection.

The tumor made life 'very hard' for Alexandra, whether it be making her 'feel shy', restricting what she could wear or her ability to travel - it being 'uncomfortable to sit in a seat for a long time' - and not having a job either.

She said: "I'm an adult now, but I still don't have my own life because of the tumor."

The tumor limited Alexandra's ability to truly live her life how she wanted (TLC)

Thankfully, after reaching out to TLC for help, Alexandra found Dr Ryan Osborne, a Los Angeles-based head and neck surgical oncologist and director of the Osborne Head and Neck Institute who believed he could successfully remove the tumor.

Alexandra now lives 20lb lighter and flew back to Germany just 12 weeks later after the operation.

She resolves to the Mail Online: "I feel so much joy now. It’s better than I ever imagined."