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Ashley Berini living with multiple sclerosis opens up

 

A 33-year-old woman, who occasionally struggles to walk or talk, has opened up about her debilitating battle with multiple sclerosis.

Ashley Berini, who lives in Sydney, was diagnosed with the crippling disease that allows the immune system to attack the protective covering of the nerves.

The Canadian woman has endured bouts of excruciating pain and episodes of numbness on the left side of her body – from her face down to her toes.

‘I received some new results back from my MRI and spinal scans and they showed that the disease is progressing – it’s not looking good,’ she told Daily Mail Australia.

‘I had a relapse the day after my birthday. I felt a shooting pain and I couldn’t walk or eat. I was vomiting – it was intense.

‘I even lost my finger tips the other day. I was lighting a candle and when my hands were burning, I didn’t feel a thing. It was strange.

‘My body comes and goes.’

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Ashley Berini (pictured) has opened up about her debilitating battle with multiple sclerosis

Ashley Berini (pictured) has opened up about her debilitating battle with multiple sclerosis

Ashley Berini (pictured) has opened up about her debilitating battle with multiple sclerosis

The 33-year-old Canadian, who lives in Sydney, undergoing brain and spinal MRI scans

The 33-year-old Canadian, who lives in Sydney, undergoing brain and spinal MRI scans

The 33-year-old Canadian, who lives in Sydney, undergoing brain and spinal MRI scans

At the age of 27, she experienced her first symptom in 2009 after she suddenly went blind in her right eye in the middle of a biochemistry presentation. 

‘It was really bizarre,’ she said.

‘I remember talking to my professor about it, describing my symptoms and she told me to go see a doctor. It was really scary at the time.

‘That was when they found the veins at the back of my eyes had started to slowly leak blood – and that’s why the blackness happened.

‘This was just the beginning of a very long and frightening process of trying to determine what was wrong and why this was happening to me.’

And it wasn’t long until her life was turned upside down with terrifying symptoms of the loss of sensation in parts of her body, blindness, and nausea.

‘I had a photographic memory in school, remembering everything. I used to read things I can retain,’ Ms Berini said.

‘Now, I can’t even remember people’s names or what I did earlier that day. I’m starting to see the effects of the disease and it scares me that I’m losing my memory.’

Ms Berini met her now-partner Freddy Dordoni at a wine festival last year (pictured together)

Ms Berini met her now-partner Freddy Dordoni at a wine festival last year (pictured together)

Ms Berini met her now-partner Freddy Dordoni at a wine festival last year (pictured together)

 It wasn’t long until her life was turned upside down with frightening symptoms of the loss of sensation in parts of her body, blindness, and nausea

But her relapses are considered the most crippling symptoms – and the pain she suffered has been so severe, she has struggled to walk and even talk.

‘Getting words out has been difficult. I know what I want to say but it takes me a lot longer to talk,’ she said.

‘My relapses are triggered by stress and entail acute cramping and constant vomiting until the inflammation starts to subside which can a be a couple of days.

‘I have sporadic relapses where my abdomen flares up. The pain is excruciating to the point where I’ve been repeatedly rushed to the hospital after being knocked out.

‘The doctors have previously believed it to be appendicitis but it never was.’

And one of the biggest decisions that has recently played in her mind is whether she wants to conceive any babies some time down the track.

‘Now I’m dealing with things like do I want to have my own children?’ she said.

‘Because the treatment they run you though is a high dose of chemotherapy so my eggs will be wiped out. It’s a big decision but I’m leaning towards freezing my eggs.’

The 33-year-old, who lives in Sydney, has been undergoing countless brain and spinal scans

The 33-year-old, who lives in Sydney, has been undergoing countless brain and spinal scans

The 33-year-old, who lives in Sydney, has been undergoing countless brain and spinal scans

Her relapses are considered the most crippling symptoms - and the pain she suffered has been so severe, she has struggled to walk and even talk

Her relapses are considered the most crippling symptoms - and the pain she suffered has been so severe, she has struggled to walk and even talk

Her relapses are considered the most crippling symptoms – and the pain she suffered has been so severe, she has struggled to walk and even talk

Ms Berini said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish.

‘I’m trying to be more strict on the diet so I don’t eat anything with gluten,’ she said.

‘I used to run everyday at the beach but I haven’t been able to anymore because I have a lesion in my spinal cord that blocks the blood supply to my abdomen.

‘I can’t walk long because my back hurts too much. I can’t walk around a shopping mall for more than 45 minutes without feeling pain.

‘But I try to keep myself fit by doing yoga and pilates. I do a bit of cardio at home.’

As her condition significantly worsens, Ms Berini – who moved to Australia in 2014 – said the disease has not deterred her from enjoying her life.

‘Before, I was in denial about it because I couldn’t see myself getting physically worst,’ she said. 

‘But I’m dealing with the symptoms a lot better. The last couple of years has become real really quick. I’m sad but I’m not letting the disease define me.

‘I treat it like it’s diabetes. It’s a manageable illness, it sucks but I’m trying to do everything I can to help me, whether it’s fitness, health or supplements.’

Ms Berini - who works in the wine industry - said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

Ms Berini - who works in the wine industry - said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

Ms Berini – who works in the wine industry – said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

She has also found solace in her 'therapy dog' - two-year-old French Mastiff named Hooch

She has also found solace in her 'therapy dog' - two-year-old French Mastiff named Hooch

She has also found solace in her ‘therapy dog’ – two-year-old French Mastiff named Hooch

Last year in May, Ms Berini – who works in the wine industry – met her now-partner Freddy Dordoni at a wine festival.

‘I was really hesitant telling him about my condition actually,’ she recalled.

‘But I didn’t want to get into anything serious unless I was upfront with him. So I ended up telling him about a week after we started dating.

‘He didn’t blink an eyelid and just said “yep… and?”. I told him that the condition was a big deal and I didn’t want to go forward in our relationship until he knew about it.

‘And he has been so supportive and caring since. He jumped on board immediately and told me: “All I want to do is help you”. I’m very lucky to have him in my life.’

She has also found solace in her ‘therapy dog’ – a two-year-old French Mastiff named Hooch who she lovingly treats as her own ‘son’.

One of the biggest decisions that has recently plagued her mind is whether she wants to conceive any babies some time down the track

One of the biggest decisions that has recently plagued her mind is whether she wants to conceive any babies some time down the track

One of the biggest decisions that has recently plagued her mind is whether she wants to conceive any babies some time down the track

Far from getting better, Ms Berini has set up a fundraising page in the hope of getting the treatment Hematopoietic Stem Cell Transplantation (HSCT) she needs.

‘Given that I am a Canadian living in Australia as a temporary resident, the high cost of my medication is not fully subsidised until I am a permanent resident,’ she said.

‘I didn’t think my situation was urgent but as I get older and my disease continues to progress, I worry that time is not on my side and unfortunately neither is my financial state.

‘I am hoping that the HSCT procedure will give me the opportunity to become healthy enough to live without medication and have the option of one day having children, whether it’s naturally, or through IVF.

‘The success rates and results are extraordinary, where people’s MS has essentially become dormant and neuron repair is occurring. 

‘Many patients no longer experience relapses, they become symptom free and most importantly it stops the disease from progressing.’

Ms Berini (pictured with her friend) said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

Ms Berini (pictured with her friend) said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

Ms Berini (pictured with her friend) said she has been leading a healthier lifestyle, following a Paleo diet where she eats food with natural oils, fresh vegetables and fish

And for those suffering from MS, Ms Berini said: ‘Don’t let the disease define you’.

‘It can’t be something holding you back. Don’t let it be a barrier. There’s so many things I want to do like wine making and travelling the world,’ she told Daily Mail Australia.

‘As cliche as it sounds, don’t give the disease the power or energy – it doesn’t deserve it. You don’t have to be on drugs, you can lead a healthier lifestyle.

‘Even just the stress thinking about the disease, progresses it even further. Always keep a positive frame of mind and block out the ugly. Try not to think about it. 

‘And it’s not a death sentence either. MS has come so far in the last 10 years. Hopefully there’s a cure for it one day but just remember it can be manageable without treatment.

‘Disease is just a disease, it shouldn’t define you as a person.’

To make a donation, please visit Ashley Berini’s GoFundMe page.

 

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