Singapore Woman Hopes To Raise Funds To Afford Injections To Treat Rare Bone Disorder
Suffering from a rare and painful sickness can be difficult, not just physically but also financially.
In 2006, Li Wan Shan (transliterated from Mandarin) was diagnosed with a tumour. She had the tumour removed in 2008 and her health seemed to improve after that.
Unfortunately, just a few months after the operation, she found that the tumour had spread to her liver.
It was also secreting too much fibroblast growth factor 23 (FGF23), which led her to develop tumour-induced osteomalacia (TIO), a rare bone disorder.
While there is apparently a new type of treatment on the market for her disease, it costs almost S$24,000 a month. Thus, she is hoping to somehow raise enough funds to afford it.
Woman bedridden for 10 years due to rare bone disorder
According to Shin Min Daily News, 67-year-old Madam Li has been bedridden for over 10 years because of the disease.
She told the paper that she suffers from severe pain in her bones and can’t even turn over in bed.
Furthermore, she can only consume mostly liquids and has to wear adult diapers.
Other symptoms include hallucinations, an upset stomach, loss of appetite, and dizziness.
She is currently relying on prescribed morphine to control the pain in her bones and nerves.
Madam Li said that no one else in her family has ever been diagnosed with the same disease.
What’s more, she also maintained a healthy and active lifestyle, so she never expected such a thing to happen to her.
Needs injections that cost S$24,000 a month
Last year, a doctor told Madam Li about a new type of drug on the market that can be injected for treatment purposes.
However, it doesn’t come cheap at all.
The shots must be administered once a month, and each dose costs almost S$24,000.
As Madam Li and her husband exhausted their life savings by seeing many different doctors over the years, this is something they are unable to afford.
Source: Ray of Hope
Madam Li’s daughter, Wang Xue Li, revealed that she has tried applying for subsidies for the medicine since hearing about it a year ago but has not received a response from the authorities.
So, in order to afford the injections, she has turned to the online crowdfunding platform Ray of Hope.
The page states that Madam Li’s family hopes to raise a total of S$286,000 for 12 months’ worth of burosumab treatment.
At the time of writing, they’ve managed to raise about S$30,000 so far.
“We’ve exhausted all other means and will have to rely on your kindness and generosity to help give my mother a chance to live a little better,” the family wrote on the crowdfunding page.
So if you’re able to, do consider making a donation. We hope Madam Li will be able to get the treatment she needs soon and be on the road to recovery.
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Featured image adapted from Shin Min Daily News on Facebook and Ray of Hope.
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