Jay Rosenthal

A Unique Clinical Experience: My Internship with the National Tay Sachs and Allied Diseases Association

The National Tay-Sachs & Allied Diseases Association (NTSAD) is a non-profit organization that supports patients and families, spreads awareness and funds research on Tay-Sachs Disease and related diseases, all of which are very rare, inherited diseases. In my internship with NTSAD, I gained experience in both the clinical and industrial/organizational areas of psychology.

The clinical experience had the most profound effect on me. On Long Island, there are three known patients with the late-onset form of Tay-Sachs disease and, under supervision, I worked with each of them. I visited them and talked to them on the phone weekly, and learned a lot about who they are, the kind of lives they lead, how the symptoms affect them and how society treats this from lack of understanding. I was surprised to find out, though, that psychotherapy had been mostly ineffective for all patients. There didn’t seem to be any communication and very little understanding between the therapist and the patient, mostly attributed to lack of societal awareness that caused the patients to be closed off and the clinicians being unsure of how to approach treatment. I saw the symptoms with my own eyes, I saw the patients’ situations with my own eyes, and it gave me the kind of experience and understanding that I could never get from the empirical literature alone.

On the industrial/organizational front, I got to help redesign some of the content on the website. In so doing, I had chance to talk to a genetic counselor who was one of the first people counsel those with Tay-Sachs and related diseases. The most eye-opening thing that I was able to do on this front is interview Konrad Sandhoff, who is the namesake of Sandhoff Disease (an inherited disease very similar to Tay-Sachs). He is a biochemist, partially retired at the University of Bonn in Germany. Sometimes, patients and their family members want to hear from the person who understands and has more experience with a disease better than most.