Showing posts with label True Stories. Show all posts
Showing posts with label True Stories. Show all posts

Medical marvel: Woman gives birth to baby after womb transplant


A woman in Sweden has given birth to a baby boy using a transplanted womb, in a medical first, doctors report.
The 36-year-old mother, who was born without a uterus, received a donated womb from a friend in her 60s.
The British medical journal The Lancet says the baby was born prematurely in September weighing 1.8kg (3.9lb). The father said his son was "amazing".
Cancer treatment and birth defects are the main reasons women can be left without a functioning womb.
If they want a child of their own, their only option is surrogacy.
Medical marvel
The identity of the couple in Sweden has not been released, but it is known the mother still had functioning ovaries.
The couple went through IVF to produce 11 embryos, which were frozen. Doctors at the University of Gothenburg then performed the womb transplant.
The donor was a 61-year-old family friend who had gone through the menopause seven years earlier.
Drugs to suppress the immune system were needed to prevent the womb being rejected.
A year after the transplant, doctors decided they were ready to implant one of the frozen embryos and a pregnancy ensued.
The baby was born prematurely, almost 32 weeks into the pregnancy, after the mother developed pre-eclampsia and the baby's heart rate became abnormal.
Both baby and mum are now said to be doing well.
In an anonymous interview with the AP news agency, the father said: "It was a pretty tough journey over the years, but we now have the most amazing baby.
"He's no different from any other child, but he will have a good story to tell.''
'Step change'
Two other medical teams have attempted womb transplants before.
In one case, the organ became diseased and had to be removed after three months. Another case resulted in miscarriages.
Prof Mats Brannstrom, who led the transplant team, described the birth in Sweden as a joyous moment.
"That was a fantastic happiness for me and the whole team, but it was an unreal sensation also because we really could not believe we had reached this moment.
"Our success is based on more than 10 years of intensive animal research and surgical training by our team and opens up the possibility of treating many young females worldwide that suffer from uterine infertility."
Liza Johannesson, a gynaecological surgeon in the team, said: "It gives hope to those women and men that thought they would never have a child, that thought they were out of hope."
However, there are still doubts about the safety and effectiveness of the invasive procedure.
Dr Brannstrom and his team are working with another eight couples with a similar need. The results of those pregnancy attempts will give a better picture of whether this technique can be used more widely.
Dr Allan Pacey, the chairman of the British Fertility Society, told the BBC News website: "I think it is brilliant and revolutionary and opens the door to many infertile women.
"The scale of it feels a bit like IVF. It feels like a step change. The question is can it be done repeatedly, reliably and safely."
The couple, fresh from celebrating the birth of their child, will soon have to decide if they want a second.
The drugs used to prevent the womb being rejected would be damaging in the long term - so the couple will either try again or have the womb removed.

Man suffering from 'ice bucket challenge' disease is 'mocked' by Germany's top folk singer over condition

A wheelchair-bound pensioner suffering from the muscle-wasting disease that inspired the 'ice bucket challenge' phenomenon is claiming thousands of pounds from Germany's most famous folk singer because she laughed at him during a concert.

Austrian Heimo Eitel, 62, says his amyotrophic lateral sclerosis (ALS) became worse after Helene Fischer mocked him in front of thousands of fellow fans - and wants £15,700 in compensation from the star.
He alleges that his ordeal began when he approached the star during a gig to offer he a present as she performed at the concert on the floating stage at Moerbisch am See, a town in the east Austrian state of Burgenland.
Humiliated: Heimo Eitel, 62, says his Amyotrophic lateral sclerosis (ALS) became worse after Helene Fischer mocked him in front of thousands of fellow fans
Humiliated: Heimo Eitel, 62, says his Amyotrophic lateral sclerosis (ALS) became worse after Helene Fischer mocked him in front of thousands of fellow fans
A huge fan of the singer, he had been waiting in his wheelchair with other admirers to give her three books, but instead of taking them when she saw him she had apparently laughed.  
Popular: Helene Fischer is one of the most successful musicians in Germany and has sold more than 9,115,000 albums 
Now he is demanding £15,700 for the insult as Europol officers allegedly hunt for her because she had not made her address available to the court in order for the paperwork to be served, including the request that she attend the court hearing.
Europol is the European Union's law enforcement agency usually seen assisting the European Union's Member States in their fight against serious international crime and terrorism.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder with various causes that recently shot to public prominence after it was a subject of a popular charity fundraising event known as the 'ice bucket challenge', with most of the money raised going to ALS sufferers.
ALS is characterised by muscle spasticity, and rapidly progressive weakness due to muscle wasting. 
This results in difficulty speaking, swallowing, and breathing, and in the case of Heimo it got significantly worse after his embarrassment at his alleged bad treatment by the German celebrity. 
His lawyer, Astrid Wagner, who said she was shocked when she reviewed the details of the case, claims she is confident of successfully representing her client and said there was plenty of proof that his condition had worsened significantly since the insult.
She filed charges after Fischer failed to appear at an arbitration hearing to see if the matter could be settled out of court.
Fischer's only comment on the incident is to say that she did not regard herself as a person who would discriminate against anybody in 'any way, shape or form'.
Charity drive: ALS is a neurodegenerative disorder with various causes that recently shot to public prominence after it was a subject of a popular charity fundraising event known as the 'ice bucket challenge', with most of the money raised going to ALS sufferers
Charity drive: ALS is a neurodegenerative disorder with various causes that recently shot to public prominence after it was a subject of a popular charity fundraising event known as the 'ice bucket challenge', with most of the money raised going to ALS sufferers
Helene Fischer is one of the most successful musicians in Germany and has sold more than 9,115,000 albums.
In June 2014, her multi platinum 2013 album 'Farbenspiel' became the most legally-downloaded album by a German artist of all time.

It May Sound Insane, But At One Time, These Medical Practices Were Totally Accepted By Everyone.

Modern medicine may be the closest thing we have to actual magic. As doctors continue to find treatments that inflict the less pain, our lifespans will continue to increase (unless pharmaceutical companies keep jacking up the price). It's easy to forget though that there was a reason why people were afraid to go to the doctor during times of old—medicine was freaking terrifying! Check out these medical procedures that actually existed that look like an actual nightmare. 

1.) Blood Letting: For a very long time, the body was believed to be full of something called "humors". Sometimes a person was sick because of "bad humors" would need to have those drained out of him by induced bleeding. Cause nothing says "good humored" like a bunch of skin slits made all over the body.


2.) Trepanning: Here the doctor would drill a giant hole in the patient's head for this was believed to cure epilepsy and other mental disorders. But you know, it would also cause create the symptoms of having a giant hole in your brain, so...


3.) Malaria: Fevers were thought to kill syphilis, so doctors of old would often infect their patients with malaria. Of course the side effects of malaria include death mostly.


4.) Net Suspension: This man didn't just completely fail at getting into his hammock, he is actually being treated for scolioses. Doctors felt the best way to align someone's back was to string them up like they were caught in some kind of Ewok trap on the moon of Endor.


5.) Radiation Injection: In the 60's, doctors in Maryland experimented with treating severe acne with radiation. Even in high school, I think I would rather have acne than skin cancer, thank you.


6.) Pedicle Grafts: This acid-trip-demon is actually a man who in WWI was injured and had part of his skin sewn into a tube and temporarily placed on his nose as reconstructive treatment. This procedure of course eventually led to modern skin grafting, but that doesn't make this any easier to look at this morning.


7.) Heliotherapy: Not sure why they made them hold hands in their underwear (seriously is this some kind of creepy cult?), but these children are being treated for tuberculosis by standing around a strong lamp. The theory was that the lamp would increase their Vitamin D, which helped them fight the bacteria.



8.) DDT Delousing: Spraying people's heads with DDT was actually an effective way to kill lice, if you don't mind cancer or global warming so much.


9.) Fecal Bacteriotherapy: This one is actually still used today as it is 90% in treating Clostridium difficile infection. To put it bluntly, they inject someone else's poop up your butt. Sounds gross, but it actually realigns the healthy bacteria in the colon.

10.) Leeching: Another method of getting rid of those pesky "humors", leeches are still used today to get rid of blood clots.

11.) Mercury Medicine: The stuff often associated with making our hatters mad was once used to treat wounds.

12.) Maggot Therapy: If you happen to have a limb that is oozing with rotten flesh, maggots are here to clean that wound up. So helpful.

13.) Urine Therapy: Many civilizations once believed drinking urine was good for the skin and could cure allergies. The Romans even used it as a natural teeth whitener. This guy is drinking it because he believes it helps him get into a meditative state. Ok dude, whatever floats your boat.


It's this kind of stuff that makes you wonder if our current medical treatments will someday seem horrible and outdated. Like do band-aids even do anything? (I'm not convinced.) At least it's still better than attempting to make a pimple disappear by injecting it with radiation.

Woman Pregnant For 46 Years Gives Birth To Mummy


In 1955 in a small village just outside Casablanca, 26 year old Zahra Aboutalib is pregnant with her first child. She was looking forward to giving birth, but after 48 hours of painful labour, she was rushed to the local hospital. Doctors informed her that she would need a caesarean section. On the ward Zahra saw a woman in terrible pain die in child-birth. She fled the hospital fearing she would meet the same fate if she remained.

In the days that followed, Zahra continued to suffer excruciating labour pains but the baby remained resolutely in her womb. After a few more days the pains ceased and the baby stopped moving.
In Moroccan culture, it is believed that a baby can sleep inside the mother to protect her honour. Zahra believed this myth and put the pregnancy out of her mind. She adopted three children and in due course they made her a grandmother.

Many years later when Zahra was 75 years old, the pains suddenly returned. Her son being concerned for his mother's well-being wanted her to see a specialist. For this they had to travel to Rabat where they saw Professor Taibi Ouazzani. He suspected the protruding belly was being caused by an ovarian tumour and arranged for her to have an ultra-sound scan. This revealed a large mass that he could not identify.

He referred Zahra to a specialist radiographer for a second opinion. He could see it was a calcified structure of some sort, but it took a detailed MRI scan to reveal that it was the baby Zahra had conceived 46 years earlier.

 Professor Ouazzania was faced with a difficult decision when deciding if it would be safe to try and remove the [calcified] foetus. The foetus weighed 7lb and measured 42cm in length.

Rare brain condition leaves woman seeing world upside down


Bojana Danilovic has what you might call a unique worldview. Due to a rare condition, she sees everything upside down, all the time.

The 28-year-old Serbian council employee uses an upside down monitor at work and relaxes at home in front of an upside down television stacked on top of the normal one that the rest of her family watches.

"It may look incredible to other people but to me it's completely normal," Danilovic told local newspaper Blic.

"I was born that way. It's just the way I see the world."

Experts from Harvard University and the Massachusetts Institute of Technology have been consulted after local doctors were flummoxed by the extremely unusual condition.

They say she is suffering from a neurological syndrome called "spatial orientation phenomenon," Blic reports.




Danilovic is able to perform her work normally by using an inverted monitor. Photo: Blic
"They say my eyes see the images the right way up but my brain changes them," Danilovic said.

"But they don't really seem to know exactly how it happens, just that it does and where it happens in my brain.

"They told me they've seen the case histories of some people who write the way I see, but never someone quite like me."

Kim Noble: The woman with 100 personalities

Kim Noble
Kim Noble: Patricia is the dominant personality among the many alter egos is Noble's head. 'I don't like being called Kim,' she says, 'but I have got used to it.' Photograph: Kate Peters for the Guardian
The painter Kim Noble is a niblet-sized woman with long, auburn hair and startlingly blue eyes. She lives in a small terrace house in south London with her 14-year-old daughter Aimee, two dogs and more than 100 separate personalities.
  1. All of Me: My Incredible Story of How I Learned to Live with the Many Personalities Sharing My Body
  2. by Kim Noble
  1. Tell us what you think:Star-rate and review this book
Kim, 50, has dissociative identity disorder (DID). She is, in effect, scores of different people – the exact number is uncertain – wrapped up in one body. These personalities are all quite distinct, with their own names and ages and quirks of temperament. Some are children. Some are male.
For a journalist, this presents certain problems. Kim Noble herself is merely a name on a birth certificate – a portmanteau of identities. So which version of her do you interview? Do you talk to whomever pops up? Hayley? Judy? Ken?
It turns out there's a protocol: you meet Patricia, the dominant personality among the many alter egos in Noble's head. With the help of regular support workers, Patricia looks after Aimee and makes sure there's milk in the fridge. It is Patricia who answers the door and welcomes me in.
The house is freshly painted, clean and tidy. Patricia appears urbane and at ease. She is well turned out, full of energy, just back from a holiday in Tenerife. Not a smidgen of psychiatric inpatient about her: no carpet slippers, no sad cardigans.
The photographer is setting up in the living room, so we go upstairs into Aimee's bedroom. I'm unsure how to address the person sitting on the bed opposite me. Do I call her Kim, or Patricia?
"I'm Patricia," she says equably. "I don't like being called Kim, but I have got used to it now."
How often does she change personality?
She shrugs. "There are about three or four switches a day."
What has happened so far today?
"This morning Spirit of the Water had a bath. And one of them was painting – it might have been Abi. And then the vacuum cleaning, another person was doing that before you came."
An alter ego who cleans! That's handy.
"Yeah, I have got my own cleaner," she says. "But nobody will do the garden."
The strangeness of Kim's story and something of what she has endured is revealed in her autobiography, All Of Me. The book, ghostwritten by Jeff Hudson, is a terrible tale. Kim was born in 1960. Her parents, stuck in an unhappy marriage, were factory workers, and the care of their daughter was farmed out to friends and local acquaintances. The details of what happened are hazy, but it seems that from an early age – somewhere between one and three – Kim suffered extreme and repeated abuse. And at this point her mind, traumatised beyond endurance, shattered into fragments, forming myriad separate identities. The breaks were clean: most of the principal personalities had no memories of abuse and no flashbacks. Thus she was protected from what had happened.
Kim scraped her way through childhood. Home life was fraught and she performed poorly in school. Her memory lapses and erratic behaviour were noticed but never understood. Abnormally poor memory is a classic symptom of DID. When there is a "switch", the new personality taking over does not know what has happened before they emerged. Young Kim demonstrated just such mental lacunae, and when she denied having said or done something, she was usually taken for a liar.
Did her parents never clock that something was very wrong? Patricia gives a slow blink and says, "My parents were busy."
In adolescence everything came apart. After repeatedly overdosing, Kim was placed on suicide watch in a psychiatric hospital. It was the first of many internments – each time she was released she would try to kill herself and would be readmitted. She developed anorexia and bulimia.
In her late 20s came a period of relative stability. With the immensely capable Hayley personality predominant during work hours, Kim was able to hold down a job as a van driver for five years. But one day something must have caused a switch and a disturbed personality called Julie suddenly found herself driving the van. She ploughed straight into a line of parked cars. This led to another mental health section, and a diagnosis of schizophrenia.
Eventually Kim re-emerged from hospital, and her story took another dramatic twist: somehow she found herself exposed to the activities of a paedophile ring. In the book we are told that when she reported it to the police, she received anonymous warnings to be quiet: "Threats of retaliation escalated until one day a man threw acid in her face and someone tried to set light to her bed with her in it." Kim got out, but the house was gutted.
Patricia can't remember either of these events. The first she knew of the arson attack was standing outside watching flames engulf the house. After the fire, Kim spent six months in a women's refuge. Here she became aware of the crucial, terrifying difference between her and the other residents: everyone else knew who they were hiding from. Kim could have passed her assailant in the street without realising. Something had to be done.
During this time, a new branch of mental health specialists took over Kim's care. In 1995 she was finally diagnosed with DID and began the therapy she still undergoes, without any medication. DID treatment is usually long-term and laborious – it can take years for there to be any progress. The therapist has to tease out the separate personalities and treat them individually, trying to help each come to terms with what happened in their past.
Initially – like so many of the personalities – Patricia considered the idea of DID absurd. But after six years of therapy, she finally accepted the diagnosis – and the puzzling aspects of her life slotted into place. She now understood why she always felt she was losing time, and why she had continually ended up in hospital: some of her alter egos – particularly the younger ones, frozen in time and retaining memories of abuse – were highly traumatised. Judy was bulimic. Rebecca was behind the suicide attempts. As for the acid and arson attacks, Patricia discovered they were to intimidate Hayley. She had been the informer.
Patricia cannot determine when or how often she changes into someone else. But there are triggers that are likely to set off a switch: Judy comes out at meals, Spirit of Water takes the baths. Last October Patricia and Aimee appeared on the Oprah Winfrey show and beforehand, they were filmed at home. There are some clips on YouTube: Patricia is sitting in front of a plate of food when her shoulders give a tiny jolt and she turns into Judy, a truculent 15-year-old who believes she is fat.
Each time there is a switch of personality and Patricia re-emerges, she has no notion of what has happened in her absence. So daily life is beset with lost keys, unrequested pizza deliveries, the car mysteriously parked miles from home. "I don't ever know if I am coming or going," she says. "I could switch at a door, like at the doctor's surgery, and think, 'Have I just been in?'" She shrugs wearily. "You can't ask, so I just walk off."
The other personalities have independent lives. They have their own email addresses – Patricia doesn't know their passwords; they buy clothes. Patricia shows me a large silky tent of a dress. "Does it look like me? Size 14! That'll be Judy."
Patricia is dependent on benefits, supplemented by the occasional sale of a painting. How does she – how do they – manage money? "I have control of the card and they don't know the pin number."
And what about sex? Patricia laughs. "Oh, I gave that up years ago. Any relationship like that is just too complicated."
But life hasn't always been sexless. In 1997 Kim gave birth to Aimee. The baby was immediately taken into care by social services. For years Patricia remained unaware she had a daughter.
How can a woman not realise she's had a baby?
Patricia shrugs and holds up her hands. "It was so bizarre. But there was barely a bump."
But what about the scar from the caesarean?
Patricia gestures to her flat stomach. "It doesn't show. It's mind over matter."
This might sound unbelievable but it can, in part, be explained by the fact that Kim's dominant personalities have changed over the years. Around pregnancy and Aimee's birth, Patricia was an occasional subsidiary presence. Years later, once Patricia accepted Aimee was her daughter, she instantly knew who the father was – an on/off boyfriend she'd met during her driving days. In the book she writes, "I may not have been there to give birth to Aimee, but I did conceive her." Patricia contacted the father to tell him, but he has never been involved in Aimee's upbringing.
During the pregnancy, a personality called Dawn was in charge. But following the trauma of the baby being taken away, Dawn retreated and super-efficient Hayley returned to the forefront. It was Hayley who began legal proceedings to claim Aimee back; then Bonny, a more excitable personality, took the fight through the courts.
It seems surprising that someone with multiple personalities should be trusted with the care of a baby, but Patricia says "the body" – the collective personalities of Kim Noble – would never allow Aimee to be harmed. And Kim's mind does, on occasion, possess a certain instinct for self-preservation. When eventually she was allowed to meet Aimee, only Bonny and Hayley and the other responsible front-line personalities came to the fore. After months under observation in a mother and baby unit, Aimee was allowed to live with her mother under a care order.
Everything has gone well. Two years ago, the care order was lifted, and the success of the parenting can be seen in Aimee: clever, pretty and popular, she was head girl of her primary school and is magnificently imperturbable. "It's exciting," she observes. "With other mums you have got one person. That is a bit boring." Does her mother's DID make things difficult? "There aren't many disadvantages, apart from the fact that she can't really cook, because if the oven was left on and she switched, that could start a fire."
Is the DID ever exasperating? "It can be. When I am talking to other personalities and the main personality comes, I think, 'I haven't finished what I was going to say!'"
Among the frequent personalities, Aimee can identify which is which at a glance. Some are very easy – Ken wears his hair up and has a blokeish way of pulling his shoulders back; with others the body language is more subtle. Are there any personalities she doesn't like? "There are some that come out more often, so I know them better. Judy, because she's 15, talks to me in a friendly way, like a mate. But I like them all."
The ultimate aim with DID therapy, which is not always possible and sometimes too risky to attempt, is for the patient's mind to reintegrate and become whole. Does Patricia want to integrate? She shakes her head. "My attitude is: how can I get a memory? I wasn't there, I was not in that room when that happened."
She takes me to her tiny, paint-spattered art room. It's a revelation. Since Patricia began art therapy in 2004, more than a dozen personalities have started to paint regularly and prolifically. The styles, palettes and skill levels vary enormously. Some paintings are abstract, others more representational. The paintings of Ria Pratt, a very disturbed personality, are naive little cameos with whips and cages and wispy stick figures, with the children being raped or abused painted in lighter colours.
The first of Ria's pictures was a horrible shock for Patricia. "Aimee was very little then and I had to put it away because it was quite graphic. But when I see their paintings I get excited. This is the nearest I am ever going to get to being integrated."
Dr Valerie Sinason, the psychotherapist who initially treated Kim, describes DID as "a brilliantly creative survival device". She is full of admiration for how some of her patients' personalities, having hived off the traumatised parts of their mind, can forge ahead. She believes that, like people with Asperger's, they can sometimes demonstrate exceptional powers. "They can go further than normal people because they are not held back."
Kim is a case in point. By any measure she – or rather Patricia – represents a very successful adaptation. She's managed to turn her life around, gaining considerable professional success and recognition. Patricia beams. "I am happy with everything."
 One Of Many, an exhibition of Kim Noble's artwork, opens at the Bethlem Gallery, Bethlem Royal Hospital, Beckenham, Kent on 9 November.

Man Suffered Nosebleeds for Years. Then Doctors Looked in His Nose and Found Out Why.

A 22-year-old Saudi Arabian man suffered from several nosebleeds each month for years. When he went to the doctor, they were surprised to find out why.
It turns out an extra tooth was growing there, a report published in the American Journal of Case Reports stated (via the abstract posted by the National Institutes of Health).
Image source: @LiveSciHealth/Twitter
Image source: @LiveSciHealth/Twitter
“Anterior rhinoscopy revealed [an] ivory white nasal mass antero-inferiorly in the left nasal cavity touching [a specific region of the nose]. There was no bleeding. Nasal endoscopy showed a white cylindrical bony mass 1 cm long arising from the floor of the nose, with no attachment to the nasal septum or the lateral wall of the nose,” the study authors said. “Examination of the right nasal cavity was unremarkable.”
“It’s an unusual case of an extra tooth — certainly, the most impressive intranasal photo I think I’ve ever seen of one. I’ve never seen the tooth actually in there,”  Dr. John Hellstein, a dentist in Iowa who was not involved in the study, told Live Science.
The growth of a “supernumerary” tooth in the nose, while rare, isn’t unheard of. There have been several published studies that cite the growth of teeth in the nose. One such study published in the American Journal of Neuroradiology more than a decade ago noted three case reports of supernumerary teeth in the nasal cavity. According to this study, the phenomenon affects about 0.1 to 1 percent of the population, but the most common area for extra teeth to grow is in the upper incisor area.
The more recent study of the tooth in the young man’s nose, which was surgically removed, said the causes of intranasal tooth growth include “trauma, infection, anatomical malformations and genetic factors.”

Stoneman's Disease: A women who refuses to give up

Now, the 31-year-old is hoping to experience as much of life as she can before her muscles seize up for good.
Brave: Ashley (right) is slowly losing her ability to move thanks to a disease turning her muscles into bone
Brave: Ashley (right) is slowly losing her ability to move thanks to a disease turning her muscles into bone
Ashley dressed as a pirate for a Halloween Party in October 2012.
Ashley in Orlando, Florida at an amputee conference held in June 2013, with friend Shawnie Whitaker.
Lucky: Ashley, who has already lost an arm to the condition, says she is happy her jaw hasn't locked
Ashley is one of an estimated 700 people worldwide with Fibrodysplasia Ossificans Progressiva (FOP), an incurable disease sometimes known as 'stone man syndrome' because its devastating effects can leave sufferers completely immobilised, like living statues.
'My condition has made me who I am - an optimistic person with an inner strength and determination to succeed,' said Ashley.
'If I want to do something, then I normally find a way to do it. I don't know how much longer I will have movement in my body, so I want to experience as much as I can now.
'In other cases of FOP people have frozen solid, their jaws locking shut. They can't move and have to talk through their teeth long before they get to my age. So I actually feel extremely lucky.'
The condition arises from a mutation of the body's repair mechanism which causes muscles, tendons and ligaments to convert to bone material when damaged. 
Ashley, whose mother Carol emigrated to Georgia from Hornchurch in Essex before she was born, was diagnosed with the condition when she was three years old - six months after her right arm was amputated by surgeons who wrongly suspected she had cancer.
Childhood: Ashley, pictured with her mother Carol, was initially diagnosed with cancer at the age of three
Childhood: Ashley, pictured with her mother Carol, was initially diagnosed with cancer at the age of three
Ambassador: Ashley now hopes to raise awareness of her condition and met the Dalai Lama in 2007
Ambassador: Ashley now hopes to raise awareness of her condition and met the Dalai Lama in 2007
'During my childhood my mobility was fine, because I was still young,' she added. 'But I was quite unhappy. I felt very different from the other children at school, and I didn't have many friends. I was quite shy and kept myself to myself. It wasn't much of a life.'
Her symptoms first began to show when she was a teenager, with gradual muscle stiffening accelerating as she grew older.
'I began to feel my body stiffen gradually. I knew I was finally facing the onset of the condition,' she remembers.
'I'd been told what was going to happen, and feeling the first symptoms made me want to experience everything life had to offer - before it was too late.'
She married Shawn Keeney, 31, a man she met online, but the pair divorced in 2005 after three years of marriage.
'I'm still on good terms with Shawn and I look back on our time together with nothing but fondness,' says Ashley.
Achievement: Ashley was able to complete a five kilometre surfing course using a specially adapted board
Achievement: Ashley was able to complete a five kilometre surfing course using a specially adapted board
Proud: Ashley wants to do as much as she possibly can before her ability to move is completely lost
Proud: Ashley wants to do as much as she possibly can before her ability to move is completely lost
'Walking down the aisle, with full use of my limbs, was one of the happiest days of my life, and no one can take that memory away from me.'
Despite her happy memories, in May 2006, Ashley's life took a turn for the worse after she was involved in a serious car crash. 
She escaped without any broken bones but her right leg took a heavy impact.
'My doctor warned me that just the slightest bump could trigger the FOP to take hold. After the smash I fully expected my leg to freeze up permanently,' said Ashley.
'One of my worst fears was that my body would fuse upright, meaning I'd never be able to sit again.
'When my leg locked in a standing position I was sure I was facing a worst-case scenario. Luckily when the swelling went down I was able to bend the leg slightly.
'I spent a lot of time sitting in the hope it would fuse in that position. At least then I could sit in a wheelchair and be wheeled around.'
Her leg locked into a bent position permanently in May 2007, and Ashley was fitted with a special platform shoe to help her maintain as much mobility as possible.
Since the setback, Ashley has been determined to do more with her life and so far, has learned to surf and completed a five kilometre course in a specially-adapted wheelchair in August last year.
She has also become a full-time ambassador for amputees and families affected by the FOP and in December she is going on a Caribbean cruise with 100 friends who are amputees. 
'I've been blessed to meet so many truly amazing people, especially the Dalai Lama - that was a real honour,' said Ashley of the religious leader, whom she met in 2007.
'I feel so humbled that so many people have taken an interest, and hopefully found some inspiration, in my life.'