Thursday, August 8, 2013

Increase Awareness of Lemierre's Syndrome

Recently, I was thinking about the title of our blog: Bri's Hope for Cure of Lemierre's Syndrome. I think maybe what I really meant to call it and the reason why I started a blog, is because I wanted to increase AWARENESS of what Lemierre's is and how to diagnose it. The diagnosis is so important that maybe we should have called this blog: Increase Awareness of Lemierre's Syndrome. If treatment is begun, then the patient at least has a chance.

The problem is because it's The Forgotten Disease or The Mysterious Disease, treatment is delayed because of no diagnosis or wrong diagnosis and patients suffer or they die. My daughter was in excruciating pain for weeks. I couldn't help her so I felt helpless. But my helplessness was even deeper because not only could I help her with the pain, but her pain seemed to travel to different parts of her body. She complained of neck pain for weeks. Her body would go through fevers on and off. Then she was fine. Then it would reappear. It was so frustrating and scary.

While reading through Bri's medical records after we left the hospital, I found an excerpt from her main doctor who mentions it in her first record speculating what she may have. He later told me they had treated a young man several months before with the same symptoms. That was the reason he said he thought it possibly could be Lemierre's. What luck! This is a very rare disease with only approximately 160 reported cases in the last 100 years.

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