Name: Lauren
Age and date of diagnosis: At 3 years old, in 1998, she was misdiagnosed. Her diagnosis was changed in November 2020 to HLH at 26 years old.
Diagnosis: Primary HLH with CNS and lung involvement
Interests: Lauren loves musicals, doing games on her Kindle, coloring, PBS kids shows, and easy crafts.
Lauren has been sick since she was 2 1/2. It took about a year and a half of heavy steroid use to see that her disease was evolving. They believed a mold had caused hypersensitivity pneumonitis. As time went on her lungs began to form nodules and she was doing very poorly. We went to our local children's hospital and she had many many tests with everything showing inconclusive. Her pathology was sent to many labs, Texas and Bethesda, MD. No one could figure out what was happening. From 1998 to 2018 she was treated for the disease they believed she had, Lymphomatoid Granulomatosis, which required chemotherapy and radiation. It spread to her brain by 2001 and she responded well to treatment, but damage had been done.
In 2018 her disease had continued to affect her brain, so she was put in hospice/palliative care.
She has been stable since 2018 when she did ritxuimab and cytoxan, but she struggles with her immune system. After her sister, Katie’s, DNA testing we opted to test Lauren. Turns out she also has the gene mutation that Katie has so her diagnosis was changed in Nov 2020. We are now considering appropriate care for her considering what she has been through.
Because of what Lauren has gone through, due to her misdiagnosis, she made diagnosing her sister, Katie, a high priority to the medical teams which has saved Katie's life. This is why advocating and our stories are SO important.
