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Living with KD

Practical Guidance for Patients

Covid 19 Vaccinations and Treatment Guidelines

COVID19 vaccination in patients with spinal and bulbar muscular atrophy

The Sunnybrook ALS/Neuromuscular clinic at the University of Toronto follows a large number of patients with Kennedy’s Disease (KD). Since patients with KD may experience respiratory impairment and are at increased risk of complication of respiratory infections. The Sunnybrook clinic recommends that KD patients be a priority group to receive vaccination for COVID-19. To read the letter, click here.

Dr. Christopher Grunseich, MD, a staff clinician at the National Institutes of Health has evaluated patients with spinal and bulbar muscular atrophy (SBMA) in multiple clinical studies and mentions in a letter that serious, life-threatening complications due to Covid 19 would be mitigated with COVID19 vaccination. To read the letter, click here.


The NIH COVID-19 Treatment Guidelines When Omicron Is the Predominant Circulating Variant

You may be aware that the National Institutes of Health recently published a summary of therapies, including monoclonal antibodies, that may be therapeutic against COVID-19 and the omicron variant. Some of these therapies are in short supply and may be available only to people in groups who are at "high risk for progression to severe COVID-19 and who might benefit from these therapies." To read the NIH summary of treatment guidelines, click here. Dr. Christopher Grunseich, MD of the NIH states in a lettter that SBMA patients who have contacted the COVID-19 infection should have access to the COVID-19 therapeutics, to view this letter, click here