Jess Hardiman
A 10-year-old girl was diagnosed with the ‘most painful condition’ known to mankind, marking a difficult ending to her family vacation.
Bella Macey was on vacation with her family in Fiji when a blister on her foot became infected.
That triggered the beginning of a chronic, debilitating condition that would leave her body ‘burning’.
Advert
"It's all sharp, it's burning, it's tingly,” Bella told Nine’s A Current Affair. “It's all sorts of different pain I never knew was possible.”
The youngster was diagnosed with complex regional pain syndrome (CRPS) - the same condition experienced by Maya Kowalski, whose story became the subject of harrowing Netflix documentary Take Care of Maya.
CRPS sees people suffer persistent, severe and debilitating pain, with the National Organization for Rare Disorders saying the sensation is ‘disproportionately far more painful than it should be’, and can stem spontaneously or from a ‘sensory stimulus’.
“Usually, patients with CRPS will experience limited use of their affected limbs due to the pain,” its website explains.
“Besides increased perception of pain, other signs and symptoms that are seen with CRPS particularly in its early stages are a warm, red and swollen extremity on the affected side.”
While the condition can sometimes be managed with certain types of therapies, there is no known cure.
"It's the most painful condition known to humankind," Bella's mother Emma Macey, from Melbourne, said.
Bella’s CRPS is so extreme that she often struggles to hug her own family, while even touching water causes pain – meaning she can’t shower or take a bath.
She takes 18 different drugs, but nothing has helped ease the pain, with doctors so far only able to rule out various potential causes.
"I can't put (on) any sheets or anything on,” Bella said.
“Even with a tissue, you can't touch it with anything, otherwise I will scream."
Bella is now due to travel to the US to visit the the Spero Clinic in Arkansas, which specialises in treating CRPS.
Dr Katinka van der Merwe, who is the world’s leading expert on the condition, said: "It is really, truly an awful condition. It causes pain higher than that of childbirth on the McGill pain scale.”
She added: "Our treatment process is very extensive. It consists of rehabilitating the central nervous system and removing barriers so that the body can heal from within, starting with the central nervous system.”
The family have now set up a GoFundMe to help with costs, with Emma saying the family are willing to do whatever it takes to help Bella.
"A month ago everything changed, she was struck down with an excruciatingly painful illness called CRPS," Emma says in the fundraiser description.
"Since her diagnosis, she has been battling excruciating pain that affects her daily activities and steals away her childhood.
"Bella's pain has meant she has lost mobility in her right foot and leg, right up to her groin. She is now bedridden or in a wheelchair if she needs to get around."
She adds: "Every donation, no matter the size, will make a significant impact on Bella's journey towards recovery. Your support will not only alleviate the financial burden on our family but will also restore hope and strength to Bella and remind her that she is not alone in this fight.
"Together, we can help Bella overcome CRPS and pave the way for a brighter future."