From an anonymous patient -- June 1, 2009

So far, I have been fortunate that I have not experienced any real symptoms of HCL and have not yet received any treatment. I have quarterly blood tests to monitor the course of the disease, but absent adverse developments in my blood counts or the symptoms appearing, I will continue to live with the disease without treatment. My personal research into HCL, coupled with the advice of a number of medical practitioners, give me comfort that even if treatment is needed, the prognosis is excellent. I offer all this as encouragement to take HCL seriously, but to believe that with proper diagnosis and treatment, which could range from active monitoring to active intervention with well-tested therapies, a patient with HCL has a very high probability of leading a long and fulfilling life. If we are fortunate, the work of the Hair Cell Leukemia Consortium will over time improve our odds even further.

From an anonymous patient -- November 3, 2009

I’m a Vietnam vet with HCL; I was diagnosed in 2008, was watched until 2009, treated with cladribine March 2009, and am now in remission. My purpose in writing this is to raise awareness among vets about assistance available from the Veterans Administration. The VA covers a number of diseases they have determined to be presumptive due to exposure to Agent Orange. In October of 2009, HCL was added to this list of presumptive diseases. If you have been diagnosed with HCL and are a Vietnam vet, I would urge you to file a claim with your local VA office.
More information can be found at the VA web site: http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1796