Of Rare Diseases and Conditions; Understanding Toxic Leukoencephalopathy (TLE)


Numerous diseases plague the human population—some worse than others in terms of severity and fatality. The prognosis for some diseases is usually terminal, and when someone recovers, there is a buzz around it. Yet, the commotion is usually bigger if the condition is rare. One such condition is toxic leukoencephalopathy.

In the past few months, Jacob Haendel’s story has become a sensation in social and medical spheres. He is “the only documented recovered case of Acute Toxic Progressive Stage 4 Leukoencephalopathy”. His story leaves you wondering what that disease is and why it is a big deal. While Jacob’s story is an inspiration, he is a success many that many with the condition cannot find relatable.

What is Toxic Leukoencephalopathy?

TLE is a rare neurological condition characterized by deterioration of motor functions and dysautonomia (A dysfunction of the nerves that regulate non-voluntary body functions, such as heart rate, blood pressure and sweating). The first description of TLE came to be in 1982. Often it rises as a complication from heroin abuse, but there are various causes.  With heroin abusers, it is referred to as the “Chasing the Dragon” syndrome, a mode of heroin abuse that entails inhaling the drug after heating it. Usually, the drug is heated over a flame while wrapped in tin foil.

Causes, Symptoms and Prognosis

Various substances are known to cause the condition ranging from pharmacological agents to drugs. The most common causes are substance abuse and some chemotherapy drugs. In rare cases, the disease can arise as a reaction to specific medications and environmental toxins.

Every person reacts differently to substances which affect the presentation of the disease. Therefore, the sources of toxins, dosage and length of exposure, genes and patient’s medical history will influence symptoms. The symptoms may develop over weeks to months. Some common signs include headaches, confusion, impaired vision, imbalance, forgetfulness, inattention, and personality changes.

Since there is no known cure for the condition, different facilities will use various combinations of treatments. How the patient responds will influence the cause of action. The life expectancy is low, and where it is long, the quality of life is questionable.


Heroin is among the most abused drugs responsible for the development of the condition. The particular agent accountable for the disease is yet to be identified, leading to the association of heroin with leukoencephalopathy. Thus quitting heroin and other recreational drugs act as a preventive measure.

Some diseases are so rare that when a patient presents with the conditions a buzz begins. At times a curiosity begins about a person and their story and not the disease. It is essential to understand the causes, incidence, prognosis and prevalence of any infection from the necessary metrics.