Primary school teacher, 28, with rare condition so painful it’s called ‘suicide disease’ tells how she feels like she is being ‘electrocuted’ and can’t have children due to risks caused by medication
A primary school teacher diagnosed with the ‘suicide disease’ which causes her to feel she is being ‘electrocuted’ まで 25 times a day is fundraising to have an operation that can allow her to have children.
Laura Cruz, 28, from Castle Donington, ダービー, was diagnosed with the extremely rare condition called trigeminal neuralgia, also known as the ‘suicide disease’ because of the severe pain it causes that can’t be treated with painkillers.
Mrs Cruz, who got married in the summer, is fundraising on GoFundMe for surgery in January that will allow her to have children. Due to her current medication, she has been advised against having children as there is a high chance of it causing deformities.
The surgeon is hoping the operation will buy Laura anywhere between two and ten years without pain, buying her time so she can come off the medication and try for a baby.
Mrs Cruz said: ‘This disease has completely consumed my life. I can’t brush my hair or my teeth, eat, sleep, stand in the wind, or touch my face without feeling like I’m being electrocuted across my face.
‘The flare ups are so bad that I now understand why it’s called the suicide disease.’
Laura Cruz, 28, was diagnosed with rare condition trigeminal neuralgia, also known as the ‘suicide disease’
Due to her current medication Laura has been advised against having children, and after getting married in the summer to Troy Cruz, 29, 正しい, she is fundraising on GoFundMe for surgery that will allow her to have children
Laura told how she woke up on January 12 this year with a faint tingling in the right hand side of her lip.
This developed into severe pain within a matter of weeks, with doctors initially mistaking the rare illness for shingles.
But after visiting a specialist and analysing MRI scans, Laura was diagnosed with trigeminal neuralgia and began experiencing the severe pain up to ’25 times per day.’
This means the operation is her last hope at starting a family with her husband Troy Cruz, 29.
After visiting a specialist and analysing MRI scans, Laura was diagnosed with trigeminal neuralgia and began experiencing the severe pain up to ’25 times per day’
Laura was put on antiviral medication but continued to visit her GP due to the pain worsening and was first told of the condition in February
Mrs Cruz said: ‘I’m on medication that is supposed to suppress the pain but I’m still having breakthrough pain up to 25 times per day and it’s so bad that sometimes I scream out loud.
‘I ended up in A&E after my most recent flare up where I was told to go home as there was nothing they could do.’
Trigeminal neuralgia is nicknamed the ‘suicide disease’ because of the intense pain and the higher rates of suicidal ideation in patients with severe migraines.
There are also links to higher rates of depression, anxiety and sleep disorders.
The Trigeminal Neuralgia Association UK says the condition is regarded as the most painful condition that is known in the medical world.
The 28-year-old pictured on her wedding day. She said everything is triggering the pain because it’s winter: ‘The cold is making it even worse and I’m struggling to continue working at the moment’
Mrs Cruz said: ‘I’ve just got married and I feel like a burden to my husband’. Pictured on holiday with husband Troy
The operation that could buy Laura time is called a microvascular decompression, an invasive procedure that relieves the pressure placed on the trigreminal nerve by blood vessels that are touching the nerve or are wrapped around it.
The surgeon makes an incision in the scalp, behind your ear, and removes a small piece of skull bone.
They then separate the blood vessels from the trigeminal nerve using an artificial pad or a sling constructed from adjoining tissue.
WHAT IS TRIGEMINAL NEURALGIA?
Trigeminal Neuralgia (TN) is defined as a ‘sudden, 重度, brief, stabbing pain occurring in attacks lasting at the most a few seconds usually only on one side of the face and provoked by light touch’.
Patients describe such attacks as being like an electric shock, with some being so severe sufferers are brought to their knees or unable to move.
TN affects around 1.5 in every 10,000 人, with pain usually being felt on one side of a patient’s face, particularly on their cheek or lower jaw.
Although unclear, TN appears to be caused by the trigeminal nerve ‘misfiring’ and sending out pain signals.
Some experience such pain a few times a month or as often as several times a day.
ほとんどの場合, TN is progressive and worsens over time.
Treatment usually focuses on strong medication to ‘dull down’ the nervous system.
Such therapies are usually anticonvulsants for epilepsy, which can cause severe allergic reactions.
If medication is ineffective or TN continues to affect a patient’s quality of life, surgery may be required to reduce the nerve’s activity.
‘On the MRI scans, it shows I have blood vessels wrapped around the nerve and that’s what’s caused the pain so I’m fundraising on GoFundMe to have an operation to decompress the nerve and place pieces of teflon padding between the nerve and offending blood vessels.
‘We are supposed to be in our honeymoon stage and we both wanted to try for children after getting married but this illness has completely taken over my life.
‘When I looked up the condition and saw it was nicknamed the suicide disease, I was terrified.
‘There’s no cure for it so I remember thinking, how am I going to live with this?
'現時点では, everything is triggering the pain and because it’s winter, the cold is making it even worse and I’m struggling to continue working at the moment.
‘I’ve just got married and I feel like a burden to my husband.’
Mrs Cruz and her husband Troy, who works as a cameraman, got married in summer and were hoping to try for a family this year.
彼女は言いました: ‘The surgeon is hoping the operation will buy me anywhere between two and ten years without pain so I can come off the medication and try for a baby.
‘That was the most devastating part for me.
‘One day it’ll return but if it can buy me time to have a family, that’s what I care about.
‘The waiting times on the NHS is anywhere from six months to two years and I can’t wait that long – the pain is unbearable.
‘The operation is booked for January 20, I just hope I get enough funds through my GoFundMe page.
‘This is an invisible illness and a lot of the time, people will think there’s nothing wrong with me but I want people to know more about this illness and realise that this is serious.’
So far Laura has raised £6,965 on her GoFundMe page for what she hopes will be life-changing surgery in January.