Mother’s nose has slowly CAVED IN after she developed a rare condition ‘when she hit it on a radiator during an epileptic fit’

• Savannah-Kelly Simmonds nose constantly hurt after the fit in May 2015
• She saw numerous doctors and specialists before a diagnosis a year later 
• Granulomatosis with polyangiitis causes inflammation of the blood vessels
• It can be life-threatening if blood flow to organs is restricted 
• Ms Simmonds, 37, has had mainly failed surgeries to save her nose 

Savannah-Kelly Simmonds’ nose has caved in after developing a rare condition. Pictured before

A mother has told how her nose has caved in after developing a rare condition from when she accidentally hit it on her radiator.  

Savannah-Kelly Simmonds suffered constant nasal pain following the mishap, which happened during an epileptic fit in May 2015.

The 37-year-old’s nose gradually began to cave in on itself, leaving her desperate for answers.

She received a diagnosis of granulomatosis with polyangiitis in 2016, following numerous trips to see multiple doctors and specialists.

Despite several operations to try and save her nose, as well as chemotherapy, the condition caused her nasal bridge to collapse and her nostrils to close up.

The mother-of-three, from Grays in Essex, has described her life as a ‘living hell’ trying to find a cure.

Ms Simmonds, who is now contemplating getting a prosthetic to replace her flattened nose or having it amputated altogether, said: ‘After I hit my nose during an epileptic fit, it has never been the same. 

Ms Simmonds received a diagnosis of granulomatosis with polyangiitis in 2016, following numerous trips to see multiple doctors and specialists

Ms Simmonds suffered constant nasal pain after she had an epileptic fit in May 2015 when she hit her face on a radiator (pictured, bruising on her face)

Ms Simmonds said: ‘After I hit my nose during an epileptic fit, it has never been the same.

‘Four months later, my nose was still hurting, was very dark in colour and I couldn’t touch it – I was incredibly bunged up but wasn’t able to blow my nose without being in excruciating pain.

‘As time went on I realised that the reason I was so “bunged up” was because my nasal cavities were closing and my entire nose was collapsing in on itself. 

‘One day, I woke up and couldn’t breathe so knew it was time to go to A&E, which is where they decided to do a CAT scan.’

After finally being seen by numerous specialists, a year later, in 2016, Ms Simmonds was diagnosed with granulomatosis with polyangiitis (GPA), previously known as Wegener’s granulomatosis.

The rare disease causes the immune system to attack blood vessels. Often the first signs are a congested and runny nose.

Blood flow to some of the organs – such as the nose, sinuses and kidneys – slows, which causes areas of inflammation called granulomas to develop. 

Scientists are unsure of what causes it, but believe it may be triggered by an infection or a virus, according to the National Organization for Rare Disorders.

It may also develop when an injury with inflammation provokes an abnormal immune system reaction.

Ms Simmonds said her nose felt ‘bunged up’ for months after falling on the radiator. She was unable to touch it because it was so sore. Pictured before with a friend

Ms Simmonds said: ‘One day, I woke up and couldn’t breathe so knew it was time to go to A&E’

Ms Simmonds described her life as a ‘living hell’ trying to find a cure for her disease so it won’t ‘control her any longer’. She is pictured before with a friend

WHAT IS GPA? 

Granulomatosis with polyangiitis (GPA), also known as Wegener’s disease, belongs to a group of diseases characterized by blood vessel inflammation (vasculitis).

Most commonly, it affects the sinuses, lungs and kidneys, but can also affect the eyes, ears, skin, nerves, joints, nose and other organs.

For 90 per cent of people, the first symptoms appear in the respiratory tract (e.g. nose, sinuses and lungs) and include nasal congestion, frequent nosebleeds, shortness of breath and cough that may produce phlegm. 

Many patients need chemotherapy drugs to suppress their immune system to keep their condition under control.

If it’s not treated, it can cause permanent damage to some parts of the body, the NHS states, such as changing the shape of the nose. 

Scientists are unsure about what the exact cause of Wegener’s granulomatosis is – but believe it may be down to a fault in the immune system.   

If left treated, GPA can cause serious and permanent damage, such as changing the shape of the nose, kidney failure or a heart attack, if the arteries of the heart are affected.

It is believed to affect around one in 33,000 people in the US, but exact figures are unclear.

Speaking of her diagnosis, Ms Simmonds said: ‘This finally gave me an explanation as to why my nose was caving on and every year that goes by my nose continues to collapse more.

‘I’m now doing everything I can to look for options to move forward as I cannot let this disease control me any longer – whether that’s getting a prosthetic to replace my flattened nose or having it amputated altogether.’

Immunosuppressive drugs are usually prescribed to control GPA, which may then leave the patient with a very low immune system and vulnerable to infections.

Although Ms Kelly Simmonds has had over four years of surgeries, chemotherapy and different medications, she claims that nothing has worked so far.

She said: ‘I had three surgeries to try and open my nose again and return it to normal, but nothing worked.

Although Ms Kelly Simmonds has had over four years of surgeries, chemotherapy and different medications, she claims that nothing has worked so far. Pictured, her nose as it was collapsing

‘My most recent surgery was where they tried to put splints into my nose to stop my nostrils from collapsing but even that failed.

‘I even tried to use vaseline and cotton buds to open my nostrils myself. 

She added: ‘Then in December 2016, I started chemotherapy in hopes that it would suppress my immune system to stop my body from eating my nose.

‘But after six rounds, that didn’t work either, so I’m left desperately searching for cures.’

Now, Ms Kelly Simmonds is reaching out for answers and possible cures to get her nose and her life back.

It is not clear how her breathing may be restricted, but a major symptom of GPA is breathing difficulties. 

Ms Simmonds said: ‘I feel like there’s no options left – any route I go down, it doesn’t work.

‘It’s getting to the point now where I’d rather have my nose amputated or at least have a cover-up prosthetic because I don’t there’s any other options.

‘I hope that by sharing my story I’ll be able to get some answers and recommendations.

‘But mainly, I want to raise awareness for this horrible disease that has taken away my life and my nose.’

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