Being a medical student and having ALS is a toxic concoction of health longevity. Yentli Soto Albrecht is a researcher on ALS at Penn Medicine alongside her battles with the neuro-degenerative disease. She was genetically tested for having the disease and lost her 66 year old father to the same disease in 2024. Her goal is to make a survival-against-the-odds diagnosis for ALS and FTD. The ALS is linked to a form of dementia called FTD. It affects the frontal-temporal lobe causing atrophy.
Abnormal accumulations of tau, TDP-43, and FUS proteins are commonly linked to FTD, while abnormal alpha-synuclein proteins are associated with Lewy body dementia. There are also some differences between the symptoms of Alzheimer’s disease and the dementia that results from frontotemporal disorders. Symptoms of FTD typically appear earlier in life—between ages 40 and 65—and Alzheimer’s disease usually develops after age 65. Memory loss is more prominent in early Alzheimer’s than early FTD. Behavioral changes are usually the first symptom of the most common form of FTD and tend to occur later in Alzheimer’s. Issues with spatial orientation are more common with Alzheimer’s, while speech problems are more common with FTD.
The ALS-FTD Spectrum
FTD and ALS share some genetic characteristics and may share common causes in some cases. In 2011, researchers discovered that the C9orf72 gene mutation can cause both ALS and FTD, and other genes have also been identified to play a role in both diseases. Research has also found that in most people with FTD and ALS, deposits of a protein called TDP-43 accumulate in nerve cells.
Rather than two distinctly separate diseases, researchers are beginning to think in terms of an ALS-FTD spectrum, with diagnoses depending on whether movement–based or cognitive symptoms appear first.
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