You are here: Home / For Patients & Families / Patient Stories / I am Lulu

I am Lulu

This is my Story:


 

My husband, Robert, calls my rare disease a “brutal and unkind disease."  But it all began with very mild symptoms … numbness in three toes on my left foot.  View my video to learn more about paraneoplastic neurological syndromes.

Additional Patient Stories >
patients_icons.png

I have Paraneoplastic neurological syndrome.


Paraneoplastic neurological syndromes (PNS) are a group of conditions that can affect the nervous system in people with cancer.  They occur as a result of the patient's immune system to the malignancy.  PNS may cause severe damage to the nervous system.

  • PNS is estimated to occur in less than 1% of patients with cancer.
  • Symptoms of PNS often occur before the person realizes he or she has cancer.
  • In the majority of patients with PNS, the tumor is localized to one site without having spread (metastasized) to other parts of the body.
  • The diagnosis of PNS is based on a combination of symptoms, lab studies and the specific paraneoplastic antibodies that may be found in the blood and/or spinal fluid.
  • Treatment of PNS varies, but the main therapy is treatment of the underlying cancer.


Click here for more information about my disease >

Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .