WARNING: GRAPHIC PHOTO CONTENT
A former nurse is hoping that a pioneering treatment, akin to the Brazilian bum lift procedure popular with reality stars, will help ease the agonizing symptoms of a rare condition that is causing her body to attack itself.
Amy Daniels, 51, is hoping that having a fat transfer—more commonly used to achieve a rounded bottom to rival that of Kim Kardashian—will help to relieve the pain caused by the chronic autoimmune disorder scleroderma.
Diagnosed with the excruciating condition—in which the immune system attacks connective tissues around blood vessels and internal organs, causing scarring—in 2004, Amy had a stem cell transplant, which she believed to have been successful, until she relapsed in 2012.
Amy and her family in 2003 before she had been diagnosed (PA Real Life/Collect)
By December 2018, willing to give anything a try, she had liposuction to drain fat from her abdomen, before it was injected back into her hands, feet and around her mouth, in a bid to help with circulation.
Amy, of Wisconsin, said:
“I have a pretty high pain threshold, but the fat transfer, which is also known as fat grafting, hurt.”
“I look at all these reality stars and can’t imagine how much pain those chicks are in all the time just to look good, while I’m doing it to feel better.”
Amy and her family in 2006, just before her stem cell transplant (PA Real Life/Collect)
Amy, who has two children, Martha, 19, and Lucy, 15, with her motorcycle designer husband Mark, 52, told how she first experienced symptoms of scleroderma shortly after giving birth to her youngest daughter in 2003.
Initially, assuming her hands had swollen because of water retention during breastfeeding, she realized it was something more when they became so sensitive that even simple tasks, like switching on a light and grabbing a pen, would hurt immensely.
By the summer of 2004, her hands also started turning purple and she developed pitting—a type of scarring common in scleroderma patients—on her fingertips.
Amy during her stem cell transplant (PA Real Life/Collect)
Consulting a doctor, she was told to keep an eye on her symptoms and speak to a rheumatologist—a medical professional who specializes in musculoskeletal conditions—if they persisted.
She only started thinking she could have scleroderma after a chance comment from a neighbor.
“One day, completely out of the blue in October 2004, a neighbor said, ‘Wow, you’re so tanned,’” Amy recalled.
“As a nurse, I’d looked after one patient with scleroderma, who had hyperpigmented skin that looked like a super dark tan.”
Amy showing the difference between her hands after treatment (PA Real Life/Collect)
“My husband remembers me saying at the time that if there was any disease I didn’t want to get, it was scleroderma.”
“But, after my neighbor made that comment, it put that word, scleroderma, in my head for the first time. The next day I looked it up and there were all my symptoms. I knew right then and my heart sank.”
“I was terrified that I’d die and not see my kids grow up.”
Seeking an immediate referral to a rheumatologist, who she met with the following month, her diagnosis was confirmed.
Scleroderma is categorized into two main types—localized, which just affects the skin, and systemic, which Amy has, and also impacts on the blood circulation and internal organs.
She was also found to have Raynaud’s syndrome, which affects the blood vessels in the fingers, particularly when it is cold.
An ulcer on Amy’s thumb (PA Real Life/Collect)
Sadly, many people with scleroderma also have Raynaud’s.
“I’ll never forget hearing the news in the dingy basement of this office building. I just started sobbing,” said Amy.
“I was warned that it was very severe, and was affecting my lungs as it was hardening the vessels inside the organ.”
“The doctor even said it might be an idea to get my affairs in order. It was awful.”
An ulcer on Amy’s finger (PA Real Life/Collect)
Composing herself after her initial shock, Amy found a more specialist doctor who had experience treating scleroderma, resulting in her stem cell transplant treatment in April 2007—which was then being trialed.
To prepare her for the procedure, she endured aggressive chemotherapy to wipe her immune system, before she received the new stem cells.
“I was in the first handful of patients to undergo a stem cell transplant for scleroderma.”
Amy shaving her hair during chemotherapy (PA Real Life/Collect)
After the procedure, to ensure her immune system was not compromised, Amy was more or less “housebound,” until she grew stronger.
Feeling “fantastic” for many years afterward, in 2012, Amy’s run of good health came to a grinding halt, when she came out of remission and the painful ulcers, commonly found on the digits of scleroderma patients, returned with a vengeance.
At their most severe, Amy said they could last for more than a year and be prone to infection.
Amy and her daughters on Mother’s Day 2007 (PA Real Life/Collect)
As her feet were affected, Mark even made her special flip flops, as wearing normal shoes was too painful.
Then, desperate for some relief, her interest was piqued when she heard about fat grafting through a doctor friend, which she tried in December 2018.
Known as autologous lipotransfer, the procedure, which is also used as a reconstruction technique in breast cancer patients, sees fat harvested and enriched with the patient’s own stem cells, before being reinjected.
It is hoped this will mean facial tissue can be reconstructed and the thickening and scarring of connective tissue that comes with scleroderma will be reversed.
“Scleroderma has given me a lot of lines, particularly around my mouth. It takes your looks from you, but I’m so past caring about that,” said Amy.
“You almost go through a death of your old self and a rebirth of this new person.”
“The fat transfer treatment wasn’t about my looks, but it can also help with skin stretching which I did care about. The hope is that it aids the healing of any wounds you have, and gives you a little more padding for your circulation.”
Amy three days after her fat transfer (PA Real Life/Collect)
As well as the fat graft, Amy had Botox injected into the rest of her extremities as a temporary measure before getting fat transfers in those areas also in the future.
Now she appears to be doing well, but still feels as if she is playing a waiting game to see if the fat transfer has worked for her.
She is also waiting to start a course of physical therapy to her hand, to help improve her strength.
Amy and Mark when they first started dating (PA Real Life/Collect)
“Scleroderma is an invisible illness, so when you look fine and normal, people take it that you are. As the years go on, they stop asking how you’re feeling because they don’t want to know,” said Amy.
“Still, I try to focus on the positives and give my body kudos every day for going through what it has.”
“Very early on, I realized I couldn’t be staying in bed feeling sorry for myself. If I die early, I want my kids to see that I had this heinous disease and fought my butt off to give them as normal a life as possible. In return, they give me strength to get up in the morning and I am very grateful for that.”