MY LUPUS STORY| Diana B.

I used to keep quiet about my disease.  Not for the fear of people knowing what I went and currently go through, or for the sympathy, but rather the lack of knowledge about what lupus. People will look at me, as an example and say, “but you don’t look sick”!  What is their interpretation of looking sick? Hair loss, frailness, inability to walk or laying in bed? Well, I have all of those when I am in a flare. I cannot get out of bed, I need to be carried to the washroom, I need help getting dressed. Tears streaming down my face because of the immense pain in my body that I want to give up. Mini Stoke, leaving me half paralyzed with 2 small infants in hand. Blood clots prevented me from breathing or functioning. Having my blood counts dip to critical levels that almost kills me. Chemo, transfusions, dialysis, pills…this has all happened to me!

I was 15 years old, active in sports and just finishing exams. Summer was quickly approaching, and I was so excited to spend it with my friends and have fun. Up to this point, I was feeling very tired and unwell but thought it was the stress from my exams and from playing soccer.  I had numbness in my face, arms and legs with unusual bruising but thought it may have been from playing sports. I went to the family doctor only to be told I was growing and may have low iron. So, I made plans for the last day of school to go watch a movie and celebrate the end of studying, thinking this would make me feel better.

Determined not to break my plans because of my extreme fatigue, I went to get ready. I began showering.  As the hot water covered me, I immediately lost vision in my left eye and a strange sensation went over the left side of my body. I started to feel very weak. My entire left side went completely numb and I collapsed to the floor. I don’t remember how I managed to make it out of the shower, slurring my words I yelled for my mom, who already heard the bang and was coming to me. At this point, my ability to speak went. I was speaking gibberish. My parents immediately rushed me to the local ER where I went in and out of coma. 

The doctor in the emergency room pushed me and my parents aside. After hours of tests and waiting, the doctor gave my mom and dad different scenarios of what might have happened like, I overdosed on drugs! After hearing these absurd diagnoses and seeing the condition I was in, scared, my parents called our family doctor who then called for an ambulance where I was rushed to the Hospital for Sick Children.  

Upon arriving at the hospital, I fell into a coma. Rushed to have more testing done i.e., CT scan, MRI, ultrasounds, more blood work, the doctors were baffled. My results didn’t make any sense and were concluding the possible diagnosis of Leukemia. I was given days to live as there was nothing they could do and not truly knowing what they were dealing with. The results did not sit well with one Resident. What they thought may have been Leukemia, did not add up to any of my lab results. This resident pleaded to have the doctor’s test for a rare blood disease that she just learned about. They did and discovered I had a rare blood disorder called Thrombotic Thrombocytopenic Purpura, a.k.a TTP that diminishes the platelets in your blood, amongst other things. The normal range is 150-400 thousand, I presented with only 9! After months of being in the hospital, having Plasmapheresis through a dialysis machine, my levels finally came up to normal ranges. It was an extremely difficult, painful, isolating and scary time to say the least, having almost died!

A year later, I began feeling extreme joint pain and swelling, usual fatigue and my white blood cell counts dropping. I got scared thinking the TTP was back. At Sick Kids, further investigations were done, they concluded that I had lupus! They also discovered that my symptoms from lupus went undiagnosed and untreated for so long, it most likely caused the TTP!

Throughout the years I have had my ups and downs and daily struggles but it’s when my flares hit, I am knocked down and at my worst. I have suffered a TIA-a mini stroke, Bell’s Palsy, blood clots, critically low blood levels and I have had 4 major flares that cripple, debilitate and devastate my body and my mind with 2 of them that almost killed me! The pain is so unbearable at times that you start to think of unimaginable things to stop the pain. You begin to feel helpless and alone and that the pain will never end. My pain radiates throughout my joints and muscles with such a force, it feels as though someone is sawing through my body with a serrated blade!  It is blinding pain. Tears just stream down my face.  My husband and children must help me move, use the bathroom and get dressed. I need help to eat. It is demoralizing. My blood counts drop to low levels that concern my doctors, but they are unsure how to treat it because I do not react well to medications that are available. You feel isolated and alone. This is when I cannot leave my house. People cannot see how sick I really am.  When I finally get back up on my feet that I hear, “but you don’t look sick”! One Doctor, Dr. Kostantinos Tselios helped me get out of my last flare with 2 rounds of Chemo and Benlysta infusions.

Through all of this, you hang on. I look at my girls’ faces. I see my husband do whatever he can for me. This is when I push to go on.  You do what you need to do to get better physically and mentally. That is why I am so determined to raise awareness of this disease.  I shouldn’t be alive right now, but I thank God I am.  If it were not for that Sick Kids Resident pushing to test for a rare disease, I would have died at the age of 15. Lupus is Serious. It is Life Threatening. It can attack any part of the body-skin, joints, blood, lungs, brain, kidneys and heart. There is a lack of knowledge not just in the community but in the medical world as well about this disease that if left untreated and undiagnosed, it is fatal!  It is known as the disease of a thousand faces because it mimics many other illnesses often making diagnoses impossible. Funding for lupus is next to non-existent here in Canada and insurance companies do not recognize this as a disease or critical illness and this has to change. Without funding, we cannot develop new medicines to treat this disease or help educate the public or make it possible to have crucial medicine covered for those that cannot afford to be able to live a “normal” life!