She has me retraining my olfactory nerves by smell and taste rehabilitation. I am also performing nasal rinses twice daily with an off-label use of an asthma medication called budesonide as well as a sodium citrate compound based on a small randomized controlled clinical trial that was led by an ear, nose and throat doctor and leader in smell and taste research, Thomas Hummel, in Germany.
My doctor and her colleagues around the world who are aware of parosmia are tirelessly studying this and looking for solutions for their patients. Yan is currently conducting a clinical trial at UC San Diego in collaboration with Stanford University to use a patient’s own platelet-rich plasma and inject it back into the patient’s olfactory tissue in hopes to promote nerve regeneration and improve sense of smell. Using small tissue samples from the nose, Yan and her colleagues are also researching why so many COVID-19 patients like me continue to suffer from anosmia and parosmia when others have recovered. Pushing for both new treatment options and further study of the causes is much needed, but it is expensive and resource-consuming.
In the Facebook support group, we are all experiencing the same challenges. Most primary care doctors and ear, nose and throat doctors have never heard of parosmia and many patients are told there isn’t anything they can do. There are thousands of people who don’t have a Dr. Carol Yan and are left feeling no hope.
I recently connected with a young woman through the Facebook support group who was being held in a hospital in Italy for an eating disorder because the staff simply did not believe her and had never heard of parosmia. People there kept trying to force-feed her and she went online asking for advice. Once I heard her story, I immediately contacted Dr. Hummel in Germany by merely Googling his email address. To my surprise, he emailed back and then connected me with the expert located in Italy. I passed along the young women’s contact information and hospital location. They now believe her and she is no longer under the psychiatric hold and investigation for an eating disorder.
Tens of thousands of us around the globe have heartbreaking stories because of this terrible disorder. We need Dr. Yan’s and her colleague’s studies to move forward so we can all move forward with our lives. For more information about Dr. Yan’s research efforts, Google “UC San Diego and loss of taste and smell.”
