A woman who was born with a massive leg is the first person in the US to undergo a ground-breaking treatment to shrink the limb.
Arianna Faro, 28, has Klippel-Trenaunay Syndrome (KTS), which has caused her right leg to double in size. She also has a swollen foot and buttock, as well as abnormal growths on her vagina.
The disorder has triggered the skin-infection cellulitis throughout Miss Faro’s life, which caused her to battle septic shock at just two months old.
After spending most of her teenage years bedridden and enduring more than 50 surgeries, Miss Faro developed severe depression.
But things finally seem to be looking up after she has been on a cancer drug, which could shrink her leg, for the past three months. Details of her treatment are unknown.
Miss Faro, of Wilmington, Massachusett, claims she is pain free for the first time in 14 years and hopes the therapy means she never has to go under the knife again.
Arianna Faro was born with Klippel-Trenaunay Syndrome (KTS), which caused her right leg to double in size (pictured). She is the first person in the US to undergo a ground-breaking treatment at Boston’s Children’s Hospital, which could finally shrink her limb
Miss Faro’s KTS was visible as a child, with the condition also causing her to develop a port-wine stain on her affected leg. It was not until she turned 14 that her limb really began to swell
After years of agony, Miss Faro claims the treatment has made her pain-free for the first time since she was 14. She is pictured with her sister Alyssa, mother Cheryl and father Matthew
Speaking of the ordeal, Miss Faro said: ‘I have been extremely impacted by this condition, I was spending most of my time in bed unable to walk.
‘I went through a major period of depression and anxiety.
‘It seemed at the time like things were hopeless.’
Miss Faro is undergoing treatment at Boston’s Children’s Hospital in the hope it will shrink her leg and prevent recurring infections.
The therapy seems to be working with Miss Faro reportedly being pain-free for the first time since her KTS spread to her groin at 14 years old. Her two sisters are unaffected.
Miss Faro, who used to rely on a wheelchair, said: ‘Today is my first-day morphine free. I was on it for about a year.
‘My doctor slowly weaned me off and today is my first day so I’m excited.
‘It feels really good to not have to be dependent on a pill.
‘Probably in the past 14 years I’ve had excruciating pain. So now I don’t have it feels incredible, it’s everything I could have dreamed of.’
Miss Faro is now able to stand and sit comfortably, with sitting previously being particularly difficult.
Although early days, the treatment seems to already be making a big difference.
Miss Faro’s mother Cheryl added: ‘I’m trying not to be overly hopeful.
‘But I can’t help and just walk around with this huge smile on my face. It’s amazing, it really is.’
Miss Faro (pictured left recently) has called KTS ‘one of the most rewarding experiences of her life’ after it gave her ‘compassion’ for other people. As a child (right), Miss Faro struggled to fit in at school and always felt ‘different’. She also endured ‘infection after infection’
Miss Faro (pictured in hospital) has had 50 ‘debulking’ surgeries to remove excess tissue
WHAT IS KLIPPEL-TRENAUNAY SYNDROME?
Klippel-Trenaunay syndrome (KTS) is collection of symptoms such as port wine stains, varicose veins and extra growth of one limbs.
It is present at birth but may not become apparent until varicose veins are diagnosed.
KTS’ cause is unclear but may be due to blood vessel problems during pregnancy.
It affects one in every 20,000-to-40,000 children.
What are the symptoms?
- Port wine stains: a flat, red or purple mark
- Varicose veins: swollen, enlarged veins that usually occur on the legs. They may be blue, lumpy or twisted in appearance
- Limb hypertrophy: an extra growth on the affected limb
KTS cannot be treated, however, its symptoms can often be eased.
Laser treatment can ease port wine stains, while compression stockings can relieve varicose veins.
Limb hypertrophy can be treated via raising sufferers’ shoes or surgery.
Source: Great Ormond Street Hospital
Miss Faro was born with KTS, however, the condition did not become severe until she turned 14.
‘I would be in hospital 15-to-20 times a year with cellulitis or sepsis,’ she said.
‘I was just in a repeating pattern of get hospitalised for a month, come home maybe a week or two, get hospitalised again for like a month.
‘It was very difficult.’
As she grew up, Miss Faro struggled to fit in at school.
‘As I grow my already swollen limbs grow,’ she previously said.
‘They get bigger with me.
‘I definitely felt different, especially in high school, for not being able to do a lot of the things that the other kids were doing.
‘And I was also extremely shy around boys.’
Cheryl added: ‘Arianna had some rough teenage years when her disease progressed.
‘[It] made life extremely turbulent for her.
‘It was infection after infection.
‘Medication after medication.
‘She tried to keep that vivacious bubbly, happy [persona] on the outside.
‘But we knew inside she was struggling.’
Miss Faro hopes the cancer treatment will mean she never has to go under the knife again
Miss Faro’s leg makes it difficult to walk and has left he reliant on frames (left). As a child (right), she put on a ‘happy’ persona but her family knew she was struggling
Approaching secondary school was difficult, with the young Miss Faro being very shy
Now older, Miss Faro has learnt to accept her disorder.
‘Living with Klippel Trenaunay Syndrome has been extremely hard and extremely excruciating, but also one of the most rewarding experiences of my life,’ she said.
‘It taught me to have empathy and compassion for others who are going through struggles I don’t even know about.
‘It’s not always easy. You are going to have hard days but it’s about making the good moments count for more than the bad ones.
‘It’s just knowing you can either let a condition define you, destroy you or strengthen you.
‘And I choose to let it strengthen me.’
Miss Faro (pictured with her sister) admits she has good and bad days but she ‘makes the good days count’. She chooses to let her condition ‘strengthen her’ rather than ‘destroy her’
KTs occurs due to a large number of abnormal blood vessels, which cause a port-wine stain (pictured on Miss Faro’s leg). This can lead to clots, cellulitis and anaemia