Background/Purpose: In 2011, at the age of 14, I was sent to the emergency room with a platelet count of 19. The hematologist diagnosed me with idiopathic thrombocytopenic purpura (ITP). After further testing, I was diagnosed with systemic lupus erythematosus (SLE). After a severe reaction to intravenous immunoglobulin (IVIG), the doctors put me on hydroxychloroquine (HCQ), prednisone, and azathioprine (AZA). Three years later, at the age of 17, I was diagnosed with central nervous system lupus (CNS lupus) after a lumbar puncture. After the diagnosis of CNS lupus, I was switched from AZA to mycophenolate mofetil, cyclophosphamide (CYC), and IV steroids. After six months, I was put on rituximab. Three months later, I did nine courses of plasmapheresis followed by both rituximab and CYC with IV steroids.

Intervention:

After years of trial and error with intensive and time consuming treatments, the solution I kept coming back to was communication. If my physician didn’t understand what was going on, he/she couldn’t diagnose or treat me appropriately. Research is an important component in finding new treatments and potentially cures, but there is a lot to be said about effectively using the resources and tools that we already have. A huge communication block that affected me getting proper treatment for over a year was simply the description of one of my symptoms—dizziness. There are so many different kinds of dizziness, and many of them indicate different causes and treatments. I lacked the ability to describe it more specifically, and my physician never asked or helped by giving examples. The understanding that I felt lightheaded sometimes and other times like the room was spinning was a key factor in determining one, vertigo, as part of CNS lupus and the other as autonomic dysfunction from CNS lupus—orthostatic hypotension. Until both were treated, I continued to feel “dizzy,” so we believed that the treatment wasn’t working even though it was in many ways. This is just one example in my medical story, and many, if not all, patients have also had a delay in medical care for the same reason.

Maintenance:

Individually treating both kinds of dizziness has helped me to be more functional. The vertigo improved with the CNS lupus treatments, but the lightheadedness didn’t improve until I was put on the blood pressure increasing medications midodrine and droxidopa in addition. Communicating effectively with my doctors has also helped in finding and treating new conditions—dizziness was just the tip of the iceberg in my healthcare communication. Proper communication is the reason why I could get out of my wheelchair and walk, return to school, and even play volleyball again.

Quality of Life:

I have a very high quality of life, being able to attend school, be involved in my community, and maintain friendships. Going to social events and being able to leave the house at all were things I took for granted before, but thankfully, I can do them again.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/improving-communication-with-my-physician-drastically-improved-my-health/