Hope For Limbic Encephalitis- Rare Disease Strikes Local Teen

Andrew Dickerson, at age 18 became suddenly ill on Monday, October 20, 2008. He was confused, could barely talk and displayed bizarre behavior. Andrew was admitted to Lankenau Hospital that evening and spent several weeks in the ICU.   He was very combative and began to have seizures. After two weeks of intensive testing he was diagnosed with a rare condition known as Non-Paraneoplastic Limbic Encephalitis (NPLE). The disease causes his immune system to attack his brain.

Andrew was transferred to the Hospital of the University of Pennsylvania where he has received excellent care under the direction of the world renowned researcher for this condition, Dr. Josep Dalmau.

A program on this rare condition was shown on Discovery Health, Mystery Diagnosis on Saturday, September 5, 2009 at 5:00 pm.  Non-Paraneoplastic Limbic Encephalitis (NPLE) is rated as one of the top ten rare diseases.

Andrew has suffered many seizures, had a period where he was ventilator dependent requiring several months in the ICU, and on extensive medications. As his condition improved he was admitted to an acute rehabilitation facility where he received excellent care. However, was so heavily medicated could not truly benefit from this level of care at that time. He was then sent to a sub-acute skilled nursing facility that proved to be a nightmare and ultimately caused more damage to his already fragile state. He also continued monthly admissions to the Hospital of the University of Pennsylvania for chemotherapy and other treatments.  Unfortunately, during this tremendous ordeal, we have endured a continuous battle to receive approval or maintain the care that Andrew so desperately needs. 

As a result of the misunderstood nature of this illness, Independence Blue Cross denied Andrew's medical claims for inpatient rehabilitation services or any type of skilled nursing care deeming his care needs as custodial in nature. I am pleased to report during appeal this decision was overturned and recently Andrew was approved for acute rehab care. However, the approval is on a trial basis. We had hoped he would receive approval for the full benefit allowable under our insurance plan and give us peace of mind. However again am told this is how insurance providers work. While we are happy he has moved to this level of care we are concerned about his continued care needs. Andrew has made amazing progress and needs to continue on this path to recovery that can only be achieved in the acute rehab setting. Two weeks is just not enough time. His body needs time to heal from the toxins and adverse side effects of chemotherapy and the seizure medications. This in conjunction with the excellent brain injury program at BMRH will restore him to us whole in mind and body.

We are reaching out to everyone to get the word out about Andrew and this horrible disease. We need your help in spreading the word. Andrew's Story will not be that of a young man without hope, but a promise of recovery. We are soliciting help from any resources we can find and want to bring a human focus (face) to this disease.  We welcome any suggestions.

Please sign our petition and pass this information on to anyone you feel could be an advocate for our son.

Thank you.