'Our last hope to help her': Family of bedridden woman with rare disease seeks nearly $300k for treatment

Debilitated by a rare tumour for over 10 years, the family of a 67-year-old woman are seeking help in a last-ditch attempt to alleviate her symptoms from the condition.

According to a crowdfunding page set up by her family, the woman, surnamed Lee, is afflicted with a condition known as tumour-induced osteomalacia.

Based on the description on the page, the "extremely rare" medical condition causes immobility due to bone pain, muscle twitching, nerve sensitivity and weakness.

It's a condition which Lee, who's bedridden, has suffered from for more than 10 years.

It has also caused Lee to lose her teeth and experience severe bone pain, Shin Min Daily News reported.

The tumour was first discovered in 2006 and she underwent an operation in 2008 to remove it. Her condition improved thereafter, but within six months, the tumour had spread to the liver.

The growth was also found to secrete a phosphaturic hormone, fibroblast growth factor-23 (FGF23), reported Shin Min.

According to a journal article online, the hormone results in decreased phosphate reabsorption in kidneys, hypophosphatemia (low levels of phosphorus), which leads to osteomalacia (softening of the bones). 

Speaking to Shin Min, Lee shared how for years she has been unable to turn her body while sleeping due to the severe pain in her bones. She's also only able to consume a liquid diet and has to wear a diaper at all times.

"No one in my family has ever had such a disease. Before this, I could go jogging, hiking and head downstairs to exercise. Never did I think I'd get hit with such an illness," said Lee.

During the early stages of her condition, Lee shared that she saw several doctors but they could not determine the cause. Whenever someone recommended a good doctor, she would make an appointment to see them.

"This happened for about three years and we saw a lot of well-known doctors," Lee stated.

Not only did her condition not improve, she ended up depleting her and her retiree husband's life savings of about $40,000. 

New drug costs $24,000 per injection

Due to the morphine and painkillers prescribed to manage her pain, Lee suffers from a slew of other symptoms, including hallucinations, abdominal discomfort, loss of appetite and dizziness.

Last year, Lee's doctor had told the family of a new drug on the market which could alleviate her symptoms. Patients would have undergo an injection each month, with each jab costing nearly $24,000.

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When interviewed by Shin Min, Lee's daughter shared that she had tried applying for subsidies for the treatment and also attempted to contact the manufacturer but did not receive any response.

A crowdfunding page was subsequently set up for Lee, with an aim to reach the close to $290,000 required for the full course of treatment.

It added that as the "Burosumab treatment" uses a non-standard drug, it is not eligible for funding or subsidies.

According to the page, upon successful treatment, Lee would no longer need to rely on a daily dosage of morphine to manage her pain, "and her quality of life can improve".

Lee's daughter told Shin Min: "Even if the chances are slim, I will try all ways to seek help."

She also shared: "For the past 10 years, it pains us everyday to see mum suffering from so much pain on her own, not wanting to worry us. There has been no treatment for her until the medication became available in 2021. It is our last hope to help her."

As of writing, the page has raised nearly $33,000 of its $286,000 target.

Lee's daughter described how doctors had told her that if her mum's condition were to improve, the amount of medication needed might lessen and this would in turn reduce the family's long-term financial burden. But all these will only be known once treatment commences.

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candicecai@asiaone.com