Monday, June 24, 2019

Girl, 17, who can't be left alone as she has 50 seizures a day forced to quit school



A 17-year-old who can't be left alone because she has between 50 and 60 seizures a day has had to drop out of school, has been praised for her remarkable optimism. When she was little, Freya Williams, from Plymouth, suffered with severe back pain but wanted to eventually join the British Army, so she pushed through the pain and continued to train for the forces.

a woman sitting on a table: The teen has spent weeks in a state of paralysis
Freya went on to pick the appropriate A-Levels and was well on her way to achieving her life-long dream. But her hopes were shattered after a visit to the doctor in October last year, which led to her being diagnosed with a number of health conditions.
The 17-year-old now relies on a wheelchair and cannot be left alone as she suffers between 50 and 60 seizures a day, which led to her having to abandon her studies, , reports PlymouthLive. But despite this set-back, Freya remains positive and wants to raise awareness of hidden health conditions and even hopes to write a book to inspire other unwell teenagers.
a woman wearing a black shirt: The 17-year-old now uses a wheelchair to get around
Freya has functional neurological disorder (FND), non-epileptic attack disorder (NEAD), postural orthostatic tachycardia syndrome (POTS), hyper-mobility syndrome, chronic fatigue and scoliosis. She said the long list of conditions have "caused various mental health issues as well", but the teen hopes by speaking out she will help other people who are going through a similar situation.
The former Hele's School pupil said: "I have suffered horrific back pain for around three years and in October I got diagnosed with scoliosis. This is a curvature of the spine, so my spine is the shape of a 'c’.
"This was pretty tough to deal with as my life long dream was to join the army, but I continued to train for the forces and and do my A-levels." Freya also has many allergies and after her GP tried her on a neuropathic pain killer called Duloxetine, she ended up severely ill and was "paralysed from the waist down" for around 10 days.
a person standing in a room: Freya has a number of allergies and conditions
She continued: "I also had very little movement on my upper body. I was like a young child, I had to be fed, showered, carried. "I felt like I’d lost everything. After 11 days I got discharged from the hospital after finally walking with a lot of aid." But around a week later, Freya was back in hospital, paralysed again, when she got another diagnosis.
She was told she had FND and NEAD, which Freya said "can't really be fixed" other than having intensive physiotherapy and rehabilitation, which often has no guarantee that you will be able to get "back to the way you were prior to getting sick".
Freya said when she goes to bed at night, she doesn't know which part of her body she will be unable to move the following day, which sometimes makes it difficult to carry out daily activities, such as eating.

She said: "Living with FND means that when I go to bed I’m the evening I don’t know which part of my body won’t work the next day - so I often can’t swallow foods, I struggle with walking and I went from being army fit to using a wheel chair when I leave the house." Freya also gets memory loss, constant nausea, joint pain and other debilitating symptoms due to the condition.
Freya said due to her POTS, which causes her to faint due to her heart rate being really high and her blood pressure being really low, that she "recognises different places by what the ceiling looks like".  The teenager has spent around two months in Derriford Hospital so far this year and for many of those weeks she has been in a state of paralysis.
Freya has praised the "phenomenal" health care professionals that look after her during her stays. She said: "I’ve had to leave my job and my education and basically put everything on hold. As a result of all of these conditions I now suffer very badly with chronic fatigue along with a lot of mental illnesses that are very difficult to cope with.
"The NHS and Livewell staff are just so phenomenal and it is safe to say that without them I would probably still be in a state or paralysis. This and amazing support from my
a person wearing a white shirt and black hair: Freya can have up to 60 seizures a day
She said: "Living with FND means that when I go to bed I’m the evening I don’t know which part of my body won’t work the next day - so I often can’t swallow foods, I struggle with walking and I went from being army fit to using a wheel chair when I leave the house." Freya also gets memory loss, constant nausea, joint pain and other debilitating symptoms due to the condition.
Freya said due to her POTS, which causes her to faint due to her heart rate being really high and her blood pressure being really low, that she "recognises different places by what the ceiling looks like".  The teenager has spent around two months in Derriford Hospital so far this year and for many of those weeks she has been in a state of paralysis.
Freya has praised the "phenomenal" health care professionals that look after her during her stays. She said: "I’ve had to leave my job and my education and basically put everything on hold. As a result of all of these conditions I now suffer very badly with chronic fatigue along with a lot of mental illnesses that are very difficult to cope with.
"The NHS and Livewell staff are just so phenomenal and it is safe to say that without them I would probably still be in a state or paralysis. This and amazing support from my wonderful family and close friends. "Since I have gotten sick my life has been turned around. But I now see the world in a new light and I have become a person that I am proud to be.

a close up of a woman: The teen has left school as a result of her conditions
When you are chronically ill you can wake up some days and not see the point of life anymore, and I think it is so acceptable to feel that way because it sucks, and I feel like that a lot, but I am trying to channel my illness into a positive thing.
"I met some wonderful NHS staff that inspired me to go into nursing. I have also found an inner voice since getting ill. I am so passionate about raising awareness for chronic illnesses and mental illness and sharing the passivities of my experiences and what I have learnt this year. "I try to stay as positive as I can, it’s inevitable to have the bad days and to not be OK all of the time.
"There is no amount of medicine that is going to make you happy, you’ve got to just try and stay positive and stay upbeat and do everything that you can to make it feel a little bit better and a little bit easier."

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