In 2014, Adam Tate was a college student who was working as a scout leader. One day, he went on a trip with some others to go ziplining. However, his ziplining fun turned to horror when the line snapped. Adam fell, injuring his back, neck, and head; he even became unconscious. But this was only the start of Adam’s arduous health journey, shares reporting in LeicesterLive. Adam underwent testing, including a CT scan, at the hospital to ensure that he didn’t seriously harm his back, neck, or brain. This CT scan found an unexpected surprise: doctors told Adam that his scan showed signs of a rare neurological condition called Fahr’s syndrome.

The doctors at the hospital were not well-versed in Fahr’s syndrome. Thus, they provided Adam with some frightening – and not quite accurate – information. Doctors told Adam and his family that he would no longer walk within two years and that he only had eight years to live. His family began pursuing additional care. Suddenly, Adam’s journey became more punctuated with obstacles; other specialists did not feel comfortable diagnosing Fahr’s syndrome given Adam’s age. It wasn’t until 2021, seven years after his original diagnosis, that his Fahr’s syndrome diagnosis was truly confirmed.

As many people within the rare disease community know, having a rare disease can be overwhelming and sometimes isolating. For Adam, it has been difficult to grapple with his condition because he still deals with its effects, such as post-concussion syndrome and tremors. More so, he feels that it has been mentally and emotionally challenging.

To amplify the need for increased mental health support, and to ensure that nobody else feels alone on their journey, Adam launched Fahr Beyond. This UK-based charity offers educational webinars and resources, provides a community for people with Fahr’s syndrome, and advocating for research. Adam has also participated in the 100,000 Genomes Project.

An Overview of Fahr’s Syndrome

The National Institute of Neurological Disorders and Strokes (NINDS) at the NIH defines Fahr’s syndrome as:

a rare, genetically dominant, inherited neurological disorder characterized by abnormal deposits of calcium in areas of the brain that control movement, including the basal ganglia and the cerebral cortex.

These calcium deposits cause neuron loss and brain atrophy. While this condition may affect younger individuals, it most commonly manifests in individuals in their 40s and 50s. Symptoms of Fahr’s syndrome may include:

• Headache
• A shuffling or waddling gait
• Tremors
• Dystonia
• Muscle spasticity
• Involuntary movements
• Difficulty speaking or swallowing
• Slurred speech
• Changes in behavior or personality
• Dementia
• Seizures

Currently, there are no cures for Fahr’s syndrome. Treatment is symptomatic and supportive.