It’s a bright and warm autumn day outside, but in Elani Leonard’s bedroom only a sliver of light peeks through the curtains. She’s lived like this for nearly three years, rarely leaving her room. Bright light feels like needles piercing her eyes, and the smallest task leaves her exhausted.
The 30-year-old mother of two would love to do anything other than spend her days in a dark bedroom and having to take hundreds of pills.
“It’s not easy to live like this,” Elani says. Graves’ disease, an autoimmune disorder, has enlarged her heart, caused rheumatoid arthritis, made her eyes bulge, her hands and feet swell up, and brought on anxiety, depression, mood swings, fatigue, and light-sensitivity.
“It’s so depressing,” she tells YOU. “It’s like there’s no light outside of this room. It’s very difficult but I’m praying.”
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She’s soft-spoken and must take breaks to catch her breath. Sometimes she’s barely audible, talking to us from her home in Pofadder in the Northern Cape.
Her symptoms started when she was just 25 and her diagnosis in 2017 hit her hard, Elani says. “I’d just finished studying. I’d just got my job, something that I dreamed of. “And then this disease came, and there was just one thing on my mind – I wanted to end my life.”
After she completed her studies in IT and software development, Elani was thrilled to land her ideal job. “I got a government job as a site administrator of my whole area – it was quite a nice job.”
She’d go out to sites in four towns – Witbank, Pella, Pofadder and Onseepkans – and check that things such as lights and roads in the municipality’s area were in good shape.
Not long after starting her new job, she was at a training course in Port Nolloth when she was overcome by unbearable pain. “It was all over my body. I didn’t understand what was happening to me.”
Her worried colleagues took her to a nearby hospital where doctors told her she had rheumatoid arthritis.
She was then diagnosed with Graves’ disease and her body was racked with inflammation that led to her having a heart attack a few weeks later.
Doctors told Elani her heart was enlarged and told her family to prepare for the worst.
“They told my family to say goodbye – I was on an oxygen machine and a heart machine,” she recalls. “The pastor came to pray for me, and my family came to say goodbye because there wasn’t any hope left.”
Elani survived, but she had an out-of-body experience, she says, in which she spoke to God. “He said I should go back and show my family what faith is, because it’s through faith that I’m alive. I woke up the next day.”
The inflammation and heart attack left Elani paralysed on her right side. She spent months in physiotherapy and occupational therapy to learn how to walk and to regain some sensation in her right hand, which had nerve damage.
She was devastated at having to leave her new job. “I just got my first salary and then I had to quit,” she says. “I was in and out of hospital for a year.”
If treated, Graves’ disease isn’t fatal but Elani longs for a day when it goes into remission. She takes more than 400 pills a month, including anti-depressants, pain medication, blood thinners, anti-biotics and vitamins, and at one point downed 48 pills a day.
“There’s no cure, you just have to handle the symptoms as they come,” she says. “I have a whole medicine cabinet and I keep copies of my prescriptions there because there are so many to keep track of.”
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She also has to go to the doctor every week to get a Voltaren injection for the debilitating pain. “I have constant headaches and nausea, my hair is falling out and I have weight loss even though I eat like it’s nobody’s business,” she says, managing to smile.
“Most of the time I’m in bed, reading. As you can hear, I’m getting a little tired now because of my heart and talking so much.”
Elani wants to recover so she can be there for her son, Deaclan (9), and daughter, J-Lee (4). She’s raising them as a single mom.
Her family and her faith get her through the dark days. She no longer yearns for the same things. “It’s a blessing to just wake up, so they don’t mean anything to me anymore.”
Elani relies on her mom, Wilhelmina (60), a schoolteacher, for financial support to cover her medical bills and medication, which costs up to R5 000 a month. Wilhelmina also looks after her children.
“My mom is their mom now because most of the time I’m in my room. When I feel okay, I take them out but then there are bad days when I can’t get out of bed.”
The disease has also affected Elani’s love-life – she’s too scared to commit to a relationship.
“I don’t want to hurt someone by loving them, and then I die – that thought keeps going through my mind. That’s why I’m seeing a psychologist. I’m living with a lot of fear.”
She’s on a long-list to have her thyroid removed in the Northern Cape so she’s hoping to have the operation done in Cape Town and receive treatment for her arthritis. The op will help to relieve some of her symptoms, like the lump in her throat that prevents her from swallowing properly and affects her speech.
Elani is encouraging others who are facing challenges in life not to lose hope.
This autoimmune disorder is more common in women than men, and frequently occurs in people under the age of 40.
It’s caused by an overactive thyroid gland, which over-produces antibodies. This then causes the thyroid gland to make an excess of thyroid hormones that unnaturally boost the body’s metabolism, resulting in many of the condition’s common symptoms.
These include hair loss, weight loss despite normal appetite, anxiety and mood swings, enlarged or puffy eyes, heat sensitivity and heart problems. An enlarged thyroid is typical.
Like cancer, it can go into remission and return again. There is no cure.