Deanna’s Story: Finding Hope

In 2005, a social worker named Deanna was having severe headaches. She went to multiple physicians and specialists and no one seemed to know what the issue could be. Deanna experienced so much pain and frustration, and was desperate for answers. After multiple rounds of testing and appointments, Deanna’s doctors finally realized that her headaches were the result of a large blood clot in her brain.They also informed Deanna that they discovered a brain malformation. Two years later, Deanna was diagnosed with lupus. Her doctors retroactively realized that her blood clot was the result of anti-phospholipid antibody syndrome- a common comorbidity in patients with lupus.

Last year, Deanna had to have brain and spinal surgery to prevent paralysis caused by the brain malformation. She also had to have a part of her vertebrae removed. Deanna’s lupus diagnosis exacerbated the risk involved with the already risky surgery. 

Deanna experienced many trials and tribulations because of her lupus diagnosis. Not only did she face many physical challenges, but emotional challenges as well. When she was first diagnosed, Deanna had no idea what lupus was. After dealing with lupus management and her blood clot surgery, Deanna really learned to advocate for herself. She started doing research on her own and asking her doctors a lot more questions.

After her taxing and distressing surgery, Deanna experienced severe depression and at times felt hopeless. In doing research for lupus, Deanna came across Sanguine. She was drawn to Sanguine’s mission of advocacy for rare and autoimmune diseases. She has firsthand experience dealing with a condition that’s difficult to diagnose, which is why she wants to make a difference. Deanna participates with Sanguine because research gives her hope- hope for better medical treatments and diagnostic tools for conditions like lupus. With more research, she believes scientists can develop better diagnostic tools so that those of future generations are better armed to battle lupus.


By Neelem Sheikh

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