Getting Diagnosed with Lupus
Getting diagnosed with lupus is never easy. How do you diagnose a disease that can present like so many others? It is often a very long and trying journey for those suffering to finally get an answer and my diagnosis journey was no different.
At age 7, I could no longer walk
As a child, I suffered from many different rashes and infections. Doctors always managed to find a solution to them without putting it all together. I always struggled with fatigue and pain but at such a young age. How do you describe that pain to others so that they understand, when you don’t even understand it? Finally, at the age of 7, I got strep throat and was experiencing debilitating pain in my legs. I could no longer walk. We went to my primary care physician who admitted me to the hospital where I would then go through a series of tests and treatments to try and get answers.
Doctors searched for answers
The town I grew up in at the time didn’t have a very big hospital or many options for medical care therefore tests and treatments were very limited. As my symptoms kept progressing, the harder it got for them to find out what was really wrong. The series of diagnoses doctors were telling me it was included Fifth disease (a virus that causes a facial rash), Kawasaki disease (causes inflammation in blood vessels in the body), then Peripheral artery disease (when plaque builds up in the arteries that carry blood to the brain), and lastly, Deep vein thrombosis (DVT, a blood clot commonly in the leg).
They decided to treat me with IVIG (Intravenous immunoglobulin) that I ended up having a severe allergic reaction to. At that point, they decided to transport me to a children's hospital in Las Vegas.
I spent 8 days in the ICU
Once I got to Sunrise Hospital, I spent 8 days in their ICU. At that point, I was so sick I don’t remember much. One memory that sticks out more than the rest is one male nurse who was so kind to me. He would pick me up and cradle me in his arms and dance with me. He would do just about anything to make me smile. To this day, I will never forget that the smallest acts of care and kindness are truly what get you through the darkest and hardest times. There was another nurse who was so kind to my mother. Anytime we got new diagnoses, she would bring my mom medical books and help her research the different diseases.
Finally, a doctor from the University of Utah reached out to us and requested a specific blood test for double-stranded DNA and was convinced I had lupus. Now that blood test takes a couple of days to get results. But back then, it was at least 14 days. They sent me home, telling my parents it was either rheumatoid arthritis, lupus, or leukemia.
Finally diagnosed with lupus
Finally on February 14, 2001, on my 8th birthday, we got our answer. My pediatric rheumatologist from the University of Utah and his physician assistant told us the news that would save my life. I was officially diagnosed with systemic lupus, and I was put under his care.
The journey was far from over though The doctor told us that my case was so severe that the chances of me living to the age of 18 were almost 0 percent. My diagnosis was not easy and I don’t believe it is for anyone. Every day is another day to conquer this illness and to defeat the odds I was put up against. My journey is unique but all of us suffering share the same frustration, pain, and gratitude for life.
Who do you turn to first for emotional support? (choose up to three)