Left breathless
Twenty-three and with a new baby, Summerside singer faces life with lupus, lung disease
Once an aspiring singer, illness has robbed Dakota Oliver of more than just her voice.
“I can’t sing, go for walks, play on the floor with my son… I can’t breathe,” the 23-year-old says.
Oliver has been seeking a diagnosis for her shallowed breathing, lung pain and more symptoms since June.
Now relief, in the form of peace of mind, has come.
On Tuesday, Oliver was officially diagnosed with lupus, a long-term autoimmune disease in which the body’s immune system is hyperactive and attacks normal healthy tissue.
“I can’t stop smiling,” she said. It’s not everyday someone welcomes a lupus diagnosis, but for Oliver it’s been a long time coming.
“I’ve been waiting to hear that for three years.”
Now with an official diagnosis in hand, the suspected cause of Oliver’s breathing issues is likely correct: she has shrinking lung syndrome.
DEEP BREATH
When Oliver finally got the referral for a breathing test in the middle of 2018, her lung function was about 50 per cent.
Prior to the test, she had gone to the emergency room and family doctor multiple times. Some of her diagnoses included pneumonia, chest infection, inflammation caused by fibromyalgia, pleuritis (inflammation of the pleura – membrane surrounding the lungs) and pneumonitis (inflammation of the lung tissue).
In November, she saw a respirologist and was told she likely had shrinking lung syndrome (SLS).
LEFT
According to the Canadian Lung Association, shrinking lung syndrome is a rare manifestation of systemic lupus erythematosus. Its prevalence has been estimated in approximately one per cent of lupus patients.
“I’ve had the symptoms for a while. I started taking pictures when I’d have a flare up, like the time I was watching television and all of a sudden, my lip felt funny. Next thing I knew it was swollen.”
Other symptoms include joint pain, face and skin rashes, arthritis, neurologic disorders.
SIDE AFFECTS
Shrinking lung syndrome has taken a toll.
“Right now, my body thinks my lungs are the enemy.”
“I can’t sing anymore. I haven’t been able to since August. I get through maybe one line, but I don’t have it in me. I can’t roll around on the floor with my son and play together.
“I feel like I’ve lost the first year with my little boy,” she says of 10month old baby Tucker.
Oliver also used to stepdance, figure skate and lead an active lifestyle.
She went for a hike outdoors the other day. That act alone was enough to cause serious physical pain.
“But I’m trying to get as strong and active as I can because I’ve got a long road ahead of me. I’ve been going to the gym, even though it makes me feel like I’m dying. I’m going to be sick either way, but I can be strong too.”
She says some days are worse than others.
Her mother, Joan, has seen the impact on her daughter’s life.
“It’s impacted her schooling, her work, friendships. It’s taken her passion for music away. Even hanging out with her friends has been impacted,” Joan says.
WHAT DOES THE FUTURE HOLD?
Oliver says she expects to be put on prednisone, a steroid to help her breath. If it’s proven that it doesn’t work, she could be a contender for an experimental treatment.
“Because there are so few cases studied, treatments can be scarce and also associated with treating other illnesses like cancer,” she explains.
If she does receive the treatment it could cost about $20,000.
She hopes a treatment will allow her to live an every-day life.
“Right now, I can’t commit to things because I don’t know if I’ll feel well enough to follow through.”
Recently Oliver decided to share her story publicly by starting an Instagram account.
“For the longest time I just kept it all to myself bottled up. Starting the account really nudged me to start a conversation.”
You can follow Oliver through her story on her Instagram account at https://www.instagram.com/iam__dakota/.