L'Etoile is battling Lupus, raising awareness
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Lupus is a chronic life threatening autoimmune disease. According to Lupus Canada, more than one Canadian in every 1,000 is affected.
Symptoms vary from person to person. It can develop at any age but is most common among 14-44 year old women.
Tillsonburg's Mandy L'Etoile, 39, has three children - two girls and boy - ages 22, 18 and 16. She lives with her girlfriend of two years on a small hobby farm with horses, dogs and a donkey. Employed by Toyota Motor Manufacturing in Woodstock in the assembly department, L'Etoile is currently on long term disability, which she is extremely thankful for.
"My journey started in January 2016. I was not diagnosed with Lupus until March 2017. I had many days of unexplained things happening."
Things like brain fog, memory loss, severe dizziness, severe joint pain in her hands and feet, muscle twitches, hallucinations, blurry vision, insomnia, low vitamin D, low red blood cells, and blood in the urine.
"I was seeing a neurologist who did every test under the sun, and every report didn't lead to any one specific diagnosis. She was baffled."
By June 2016 it was so severe that L'Etoile had to take a leave from work.
"My job is very physical building cars, and could be dangerous being dizzy on a moving assembly line."
She had more tests - EMG, spinal taps, CT scans, MRI, mammogram, X-rays, bladder scan, and endless blood tests.
"I had seen my family doctor, urologist, numerous neurologists, and a geriatric doctor."
In July she had pleurisy, an inflammation of the lining of the lungs, for two months straight with no relief using steroids. In September, she had a major gallbladder attack.
"The surgeon really had no idea why it was inflamed, because there was no stones. She removed it and still was confused because it seemed to be inflamed for no reason."
It was Lupus attacking a good organ.
"Basically your immune system is overactive and attacking all your good cells."
In December her shoulder joints became severely painful.
"The right shoulder is what they refer to as 'frozen'. I can barely move the joint at all, with the left shoulder following suit, but not as severe.
"In the meantime, I had printed off all of my bloodwork and noticed a test that had been ordered in August by one of the doctors who did my first spinal tap... a test for ANA (anti-nuclear antibodies). This test had come back positive and none of my doctors had been given this result."
This brought her family doctor to a rheumatologist.
"My first appointment he ordered more blood work, X-rays and ultrasounds and thoroughly checked over my symptoms. He started me on a low dose of Prednisone (steroids)."
A few weeks later the pain in her shoulder was so severe her doctor asked her to come in for a steroid shot into the shoulder joint. By this time her hair had started to fall out. In chunks.
"I showed him while I was there for the injection and he looked over my results from the blood tests. That is when the word Lupus appeared in my life. He diagnosed me with SLE (Systemic Lupus Erythematosus), started me on Plaquenil, and off I went, devastated but relieved to know what was happening."
Her hair continued to come out in chunks over the next few days, so she shaved her head.
"I had to visit the emergency room on Easter Monday with severe pain in my stomach, which was there for a few days, and they diagnosed me with a stomach ulcer due to the steroids."
Along with Plaquenil, Vitamin D and Calcium, she was put on Methotrexate, Folic Acid and Actonel.
She is now seeing a Lupus specialist and another urologist.
But it hasn't been getting easier. Recently she spent the entire day in bed due to fever and shortness of breath.
"An entire day in bed," said L'Etoile, who had bronchitis. "I am still off work almost a year later, and at this point they have no idea when I will be returning.
"This is no way to live. Not knowing what you can and cannot do from day to day. I need a cure, my family needs a cure. If I didn't have the support system with my family and work, I am not sure where I would be today.
"People say, 'well at least it's not cancer...' Really? If it was cancer they would know what to attack, they could see the tumour and attack it. This disease is unpredictable and malicious. Not knowing how to treat it due to not knowing what it will attack next."
Unpredictable and unforgiving.
"I'm still learning every day," said L'Etoile, "and I want to get this information out there. Lupus is more common than well-known diseases like Leukemia, Muscular Dystrophy, and Cistic Fibrosis... combined. That's how common it is, but nobody knows what it is."
Walk for Lupus
L'Etoile is doing what she can - she will participate in Walk for Lupus Ontario in Woodstock, June 10, 10 a.m. at South Side Park.
"I have raised almost $1,000 for this event and still getting more pledges every day. Please visit www.walkforlupusontario.org to make a donation. You can search my name and donate online. I thank you all in advance. Even a $5 donation can make a difference in finding a cure!"
L'Etoile is also involved with the Rusty Gaits Saddle Club based in Aylmer at the fairgrounds.
"They are graciously doing a fundraiser show for Lupus on July 16th from 9 a.m. until around 6 p.m., depending on the number of horses. It will be a dress down day where competitors can pay to wear a T-shirt instead of a show shirt, and there will be a silent auction table and 50-50 draw. All of the money goes straight to Lupus Ontario for research to find a cure for this horrible thing called Lupus. All are welcome to come out and watch, support and have a fun day out with horses!"
Here are some facts about Lupus during Lupus Awareness Month...
* Systemic Lupus Erythematosus (SLE) is the most common form of Lupus. Systemic means it can affect many parts of the body including brain, heart, kidneys, lungs, skin, blood, heart and joints.
* The symptoms and attacks come and go in what they describe as 'flares'. In a flare, most people are in bed and unable to function, or function with a lot of pain.
* It is a chronic, complex and prevalent autoimmune disease which is difficult to diagnose because symptoms come and go, mimic other diseases, and there is no single lab test that can confirm it.
* Early detection is key to a better outcome and can help lessen the progression and severity of the disease.
* More than 90 per cent of people with Lupus are women, mostly between the ages of 15-44.
* In Lupus, the immune system, which is designed to protect against infection, creates antibodies that attack our own tissues and organs, the kidneys, brain, heart, lungs, skin and joints.
* Lupus is the leading cause of premature cardiovascular disease, kidney disease, and stroke among young women.
A rheumatologist is the main doctor who will diagnose Systemic Lupus. There are some blood tests (you must have at least four of the symptoms listed below) which can give definitive diagnosis of Lupus. People with Lupus will have different symptoms and attacks depending how their body reacts.
Lupus is treated with anti-inflammatory drugs, anti-malarial and steroids. Cyctoxic chemotherapies similar to those given in the treatment of cancer are also used to suppress the immune system.
There is no known root cause for this incredibly torturous disease. Every day is unknown and dealt with as it comes.
Most patients hide or downplay their symptoms from their family, not wanting to burden them.
The word Lupus means wolf, and in the 18th century it was thought to be caused by a wolf's bite. This, along with a purple butterfly (butterfly rash) are the two main symbols of Lupus.
The Spoon Theory by Christine Miserandino helps explain how a person with Lupus lives day to day and can be found online.
Signs and symptoms that suggest Systemic Lupus include:
* Painful or swollen joints.
* Fingertips and/or toes become pale or purple from the cold or stress.
* Sores/ulcers in the nose or mouth.
* Low blood count.
* Red rash or colour change on the face, across the bridge of the nose, also known as the 'butterfly' rash.
* Unexplained fevers.
* Chest pain associated with breathing.
* Protein in the urine.
* Extreme fatigue, feeling tired all the time.
* Sensitivity in the sun.
* Depression, trouble thinking and/or memory problems.
* Unusual hair loss, mainly on the scalp.