Vu Nguyen's Story; Founder/Director of Lupus Victoria

September 27, 2017

In 1995, at the age of 9, Vu was diagnosed with Lupus, when it first attacked her kidneys.  Lupus is a severe, incurable and debilitating multisystem autoimmune disease.

 

Vu, who is now 34, continues to fight Lupus.

 

In 2008, at the age of 22, Vu suffered a stroke during a family trip to Adelaide.  As a result of her stroke, Vu was unable to talk properly, lost all memory of the six months prior to the stroke and was paralysed down the left side of her body.

 

Vu spent a month in the Royal Adelaide Hospital before being transported to the Monash Medical Centre in Melbourne, where she spent another six months and underwent four operations to stop bleeding and fluid on the brain.

 

She returned home and spent 18 months attending Dandenong Hospital’s rehabilitation centre and Angliss Community Rehabilitation Centre learning to walk and talk properly again and regain her memory. 

 

Vu was excited when she first walked following her stroke. She still wears a leg brace but one of Vu’s many life goals is to dispense of the brace. 

 

In 2009, Vu was diagnosed with Epilepsy which prevented her from working full-time.  However, the diagnosis did not prevent her from continuing her academic studies.

 

Prior to her stroke, Vu had commenced studying her Bachelor of Business degree at Swinburne and, after her rehabilitation, she returned to her studies and graduated in 2011.

 

In 2012, Vu returned to study at Swinburne and graduated with a Masters of Marketing in 2014.

 

During her treatment at Monash, Vu had close contact with Professor Eric Morand and Dr Alberta Hoi at the Monash Medical Centre for Inflammatory Diseases (now known as the Monash Lupus Clinic). Professor Morand and Dr Hoi suggested that Vu contact Rob Jolly, whose daughter, Kim, had passed away at the young age of 32, with Lupus, having been diagnosed with the condition at the age of 22.  Following Kim’s passing, Rob and his late wife, Christine, established the Kim Jolly Lupus Research Fund, through Monash Medical Centre, as a fund-raising initiative. It was also during her time in hospital and rehab, that Vu decided that she wanted to do something positive to fight Lupus.  Following talks with Rob, both Vu and Rob agreed that the Kim Jolly Lupus Research Fund would be a wonderful way to continue to raise funds, whilst honouring Kim’s memory. 

 

Vu’s main focus now is to raise funds for Lupus research, increase community awareness of Lupus, provide support for people with Lupus and, ultimately, assist in finding a cure for Lupus.

 

Vu, with the help of her family and huge group of friends, held her first fund-raising event in Richmond, raising over $10,000.

 

In September 2015, Lupus Victoria held its first informal board meeting and it was incorporated in January 2016.  The Board consists of Vu Nguyen, Rob Jolly, Michael Kim, Kaye Thomas, Dovi Domingo and Sammi Palinkas.  It must be said that without Vu’s dedication and perseverance, Lupus Victoria would not exist.

 

Vu has also established an online Lupus Victoria support group comprising people from all over Victoria.

 

Vu’s dream has become a reality but her passion to help to ultimately find a cure for Lupus will continue.

WE'RE NOT LAZY! WE'VE GOT LUPUS!

September 18, 2016

Having Chronic Fatigue is often a complaint amongst us. Naps or very early bedtimes are no strangers to us either. We don’t understand why this happens. Usually, it’s common just to blame the side effects of the many medications and steroids we have to take a day. Even in remission from Lupus, we still get Fatigued and that’s something that doesn’t change. With all the amount of drugs we take every day for Lupus to control the disease from attacking our bodies, none of them have balanced out our Fatigue caused by Lupus. It’s hard to differentiate whether you’ve had a hard day working or whether it’s the Lupus that is causing the fatigue. Often patients are told to change up their daily routines. Whether it is a change in exercise, diet or even sleeping patterns. You would think that these three things are important in anyone’s life, especially someone with a chronic illness. To improve one’s change in lifestyle, there is still no link or explanation to prove that this is true. Something that is true, is that Lupus patients are low on Vitamin D hence the need for the Sun. So taking steroids that make you avoid the sun doesn’t help, meaning a substitute for the Vitamin D taken is a must. Vitamin D is an easy remedy for fatigue but still much more is needed than just a pill a day.

 

More than a quarter of us a clinically depressed which makes us slowly roll out of bed each day. Fatigue and lying in bed all day can become habitual. The circle of fatigue then continues and can get worse. Getting a blood test can tell us things about how our bodies are handling the disease but it cannot measure Fatigue levels.

 

Over time, researchers are still trying to see how Fatigue can be related to the disease but this research is still years off an answer. The best answer for now, is to examine our bodies to how we feel and take note of how much we can handle.  Healthy ways of living are best adjusted into one’s lifestyle to get as much as we can throughout the day. For now, this is the best answer given to us until a diagnosis is given. So next time, think again when judging someone with an autoimmune disease. We hate being called lazy! We're not lazy. We’re just tired from Lupus!

DID YOU KNOW SOME OF THESE CELEBRITIES HAVE LUPUS TOO?

September 04, 2016

- Selena Gomez.

- Seal.

-Toni Baxton.

- Paula Abdul.

- Nick Cannon.

- Michael Jackson.

- Trick Daddy.

- Charles Kuralt.

- Ray Walston.

- J Dilla.

- Maurissa Tancharoen.

- Lady Gaga.

Click on the link to read all about them in this article below.

http://www.twcc.com/entertainment/galleries/2015/10/selena-gomez-nick-cannon-paula-abdul-celebs-with-lupus#0

HOW TO HELP YOUR FAMILY UNDERSTAND WHAT YOU'RE GOING THROUGH

September 11, 2016

Just some advice for all those suffering from a chronic illness on how to deal with relatives, friends or partners who ‘just don’t get it’. What’s worse is for those of us who have an “invisible illness” and we always get questioned to why we look so normal and we must be “faking it”. That’s why it’s invisible. You can’t see it! Yes we just love faking it and love the smell of being in a hospital bed for 10 days. We also love taking unnecessary medication that will help us live day by day for the rest of lives too.

 

This is why it’s important to have the support of your WHOLE family, if you’re lucky. When it comes to having Lupus, we are, I would say, lucky to have just the one disease. However for most of us, having Lupus means we often have more than one other too. Some of these are mainly diseases like Fibromyalia, Crohns, Sjogrens, Psoriatic Arthritis,  Epilepsy, Raynaud's and other autoimmune deficiencies. This is why it’s so important to have at least one person who understands and supports you through all of this.

 

People are quick to be critical and judgemental until they can physically see you lying there, tied up to a hospital bed with machines beeping around you. It’s hard to deal with people like this, so even if it’s letting them go, the next best thing to do is to educate those around you. People need to firstly take time to read up on your disease. I’m sure most partners and family members would have done this already. As for friends, if they really wanted to know, they would have done so already.

 

People will also think they’ve read up on the latest cure, tell you different remedies you should try and holistic treatments. Some of these may help but unfortunately, it won’t cure the disease. The disease just lays hidden in the back until you’re suddenly feeling depressed, frustrated, mad at the world or even start believing people and you end up feeling guilty that you haven’t been truthful. Let them speak. It doesn’t mean you have to try it. The harsh reality is that you have to stop communicating with them during your flare ups, stop posting about it on FB and change the subject when asked about it.

 

Once your mind is clarified that you are indeed sick through a blood and urine test, your mind can be at ease that you weren’t going crazy all this time. Now that you know you’re sick, how do you deal with it?

 

For those in your life that truly want to help, tell them to take some time out to read up about it, go with you to your doctor appointments, ask for help when you need it, ask them to differentiate your personality from your sickness. Not all family, friends and partners will change. But you never know until you’re able to open up about it. Don’t hide or feel embarrassed about it anymore. You’re also not the only one with this disease in the world. Go online and find support groups and ask them how they’ve dealt with this kind of thing.

 

*Live your life as well as you can without the added stress of what others think of you.

The "Spoon" Theory

September 13, 2016

So how do spoons relate to Lupus you may ask? Most people with chronic or invisible illnesses refer to this theory. The spoon theory is a metaphor used to explain our energy sources and the amount we use throughout the day. A spoon is an intangible unit of measurement as every person’s energy source is different. When you hear someone say, “I’ve used up my spoons”, it simply means they are out of energy and need to rest. In doing so, they can reclaim back some “spoons”.

 

A simple example for a person could be, Nancy has 10 Spoons when she wakes up and then by waking up in the morning and getting dressed she uses up one spoon to do so. She makes breakfast for the family, two spoons; going to the shops to do buy groceries and drop off her dry cleaning, four spoons; pick up the kids and driving home, one more spoon. She has used up 9 spoons so she is pretty exhausted. It’s only 3pm and she still has more than half the day left so in order to last until 9pm for bed, Nancy needs to have a nap. Once she naps, she regains 5 spoons.

 

A lot of us don’t usually like to complain that we are constantly tired. It makes us feel like we are lazy or constantly complaining, hence when we talk to people with the same understanding of the Spoon theory we simply say, “I’m out of Spoons”.

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© 2015 by Lupus Victoria.

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