map locations HTLV1

Tropical Spastic Paraparesis (TSP), caused by the virus HTLV-1 associated myelopathy or chronic progressive myelopathy, is an infection of the spinal cord by Human T-lymphotropic virus resulting in paraparesis, weakness of the legs.”

Although not all victims experience the severity of symptoms I experience, the damage does not end with simple leg weakness. It deteriorates other muscles too.  The depth of symptoms can also depend on a person’s immune system or method of exposure. Predisposed due to a rare family gene, a leading virologist from Johns Hopkins said for me, “It’s simply bad luck.”

The fact is many victims do not know they are carriers. They live their entire lives without any indication. A woman can pass this on to her baby through breastfeeding without even realizing it. In many regions of the world, TSP is familial, passed down from generation to generation. HTLV-1 also spreads via contaminated blood products. A person can live between ten to forty years with the disease. Although the virus itself is not life threatening, many of the complications can be.

For instance, blood clots due to immobilization can cause a pulmonary embolism or an uncontrolled or drug-resistant urinary tract infection both can lead to death. Unpleasant MRIs, spinal taps, and blood tests provide the definitive diagnosis. HTLV-1 can also cause T-cell leukemia.


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