May is Lupus Awareness Month and we reached out to our friend, Lia who is 13 years living with lupus, a rare autoimmune disease. After being diagnosed in 2018, Lia believes everything happens for a reason and there is always a positive in all events of life. Thank you, Lia, for sharing your story and inspiring us!:
Systemic Lupus Erythematosus; SLE; Lupus. Call it whatever you may, but never did I think I would find something like this slowly weaving its way into my life. It was always there inside of me; I just didn’t know it. I always knew that I had a very active immune system, more than most kids, but never did I think it would go down like this… And yet, it did… the disease came out and showed his ugly head on a cold and rainy October morning in 2018. So, here’s my story.
My name is Lia Marie De Dios De Los Santos, don’t worry, many people cannot pronounce all of it. I was born in Dominican Republic some 13 years ago. There are many things you don’t forget in life, your first day in high school, winning the soccer league championship with your friends, the day you get married (as my parents always tell me), and when you are told you have an incurable chronic disease like Lupus. There are very few words that can describe the assortment of feelings that hit you all at once, anger, sadness, worry, disbelief; you know something is wrong when you see your fully-grown-adult parents crying in public. I fully understand my parent’s worries now, people with Lupus, myself included, have an extremely active immune system that attacks tissues and organs in your own body; left untreated would lead to a very painful life… and passing.
At the time of my diagnosis, the future was full of new challenges, taking daily medication to stay alive, re-thinking your way of living, avoiding long and direct exposure to direct sunshine (no tanning on Second Beach!), regular blood and many other tests for the rest of your life… you get the picture. We (my family and I) needed a recipe to cope with the challenges ahead. Pretty sad story so far, one would say, but everything happens for a reason and there is always a positive in all events of life (sound familiar?). You may be wondering by now how exactly do you turn this dreadful situation into charms and positives?
Full disclaimer, I’m not a magician, but not only have we made it through 2 years of living with Lupus, it has been a family-bonding, friend-making, action-packed experience. Finding comfort and the solution to being joyful again was not easy, and it wasn’t a simple equation, it was (on the contrary) a combination of many equally diverse factors: Trusting God and praying, having the love and support of my friends and family, the amazing staff at BC Children’s Hospital (nurses, doctors, everyone), an incredible supporting community (Cassie and Friends), and [drum roll…] Rheumatology Retreat at CAMP CAPILANO!!!!!!
The truth is, living with a chronic disease changes you and those around you, it is hard and disheartening, but nothing is more resilient than a determined human being. It doesn’t matter whether you have lupus, juvenile arthritis, vasculitis, fever syndromes, know someone who has these, or you just want to help, I invite you to stand up tall and more determined than ever, to try the factors of my solution and/or provide help so that these factors continue to be available to others. Together we can get through this, raise awareness, encourage more research, find better treatment, and maybe in a not-so-distant future… The dream of a cure will no longer be so farfetched.
Your story is unique.
Your story is inspiring.
Your story is powerful.
Want to share your story? Please contact Kelly at Kelly@cassieandfriends.ca
A note on Lupus from Dr. Lori Tucker of BC Children’s Hospital:
Systemic lupus erythematosus (also known as ‘lupus’ or SLE) is a rare autoimmune disease. It occurs in about 1 out of 2,500 people, and 10-20% of people with lupus have disease that started in childhood. SLE rarely occurs in children under age 5 years, and more commonly starts during pre-teen or teen years, affecting girls more often than boys. We don’t know what causes lupus; there is likely some genetic contribution and there can be families in which there are several members with the disease.
Lupus is very variable from one person to the next; in some cases, it can start gradually and in others, a child may be very sick. The disease can affect any organ, most commonly the skin, joints, kidneys and brain. Lupus is a chronic disease, meaning that a patient will have this disease for many years. Early diagnosis and treatment is important to control the inflammation and prevent long term organ damage, and then continued careful monitoring to find any sign of disease flare and treat before it becomes more serious.
To learn more about Lupus from Dr. Lori Tucker please click here.
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