Danielle Hall: Living with lupus – Part II
Danielle Hall, who has been living with lupus since 2011, was saddened when one of her friends died from the deadly disease.
“Three years into my diagnosis, I was added to the WhatsApp group, and me and one other member had an instant connection, and we were friends ever since,” Hall said.
“When she died, I took it hard because we were so close. I started becoming depressed because she was not much different from me or much older than I was,” Hall explained.
She stated, however, that while some may see lupus as a death sentence, she is not afraid of death. She lives knowing that she can die at anytime and, as a result, she tries to encourage others who have lupus.
“I take each day as its own, because each day comes with its own set of symptoms and issues But as a child of God, I believe that my life has a purpose and I am using this time to fulfil that purpose,” Hall expressed.
CHRONIC AUTOIMMUNE DISEASE
According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage any part of the body, whether it is the skin, joints, and/or organs. Our immune system creates antibodies which protect the body from things that do not belong, but with lupus, the immune system cannot tell the difference between the bad tissues and the healthy tissues and, as a result, it creates antibodies that attack and destroy the healthy tissues. These usually cause inflammation, pain, and even worse, damage in various organs or parts of the body.
Hall told The Gleaner that the medication to treat the disease is very expensive and makes it harder to cope; and finding the funds can be frustrating.
“Lupus is not covered under the National Health Fund, and I remember having to get a medication called Imuran and I had to pay $30,000 for the medication,” Hall said. “Imagine getting $80,000 for your salary and spending all of that money on one medication, plus the others!”
The frustration is further compounded by Hall having a nine-to-five job, which, she notes, is not conducive to the illness, because not every morning is a good morning. As a result, she has turned her work area into another home because she suffers from extreme temperatures and in the blink of an eye, she would need blankets while everyone else in the office is hot.
At 28 years old, Hall is afraid to lose her teeth due to the severe sjogren’s syndrome – where she has decreased amount of tears and saliva – and gastrointestinal reflux disease. She also suffers from sleep apnea, chronic sinusitis, fatigue, and the fear that any of her organs could be affected next – and the result would be deadly.
Hall has been hospitalised 12 times due to lupus, most of which was spent at the Kingston Public Hospital (KPH). She stated that the care and support she has received from that facility is exceptional, and not only from the medical staff, but also from the customer service department.
“I mean, honestly, if it wasn’t for KPH and the DrugServ Pharmacy, I do not know how I would manage,” Hall said.
She said that she attends all her clinics free of cost and it is the only place she feels comfortable being admitted to.
After all these hardships, Hall still finds a way to assist someone else.
“I can’t remember what it feels like to be pain-free. If I woke up without pain tomorrow, I would think that I am dead,” Hall explained, “This illness has been bad, but it has made me stronger, and as a result, I can help someone else and be there for them.”
In the midst of the pain, however, Hall dreams of writing a book and becoming a lupus advocate, where she can help to educate those with lupus and sensitise those who do not understand the effects of the disease.
Hall said that sharing her story is not for pity but to inform, encourage and motivate.