HDSA doesn’t advertise their Centers of Excellence as palliative care, but it is palliative care; treating symptoms to improve quality of life and then connecting to community supports that are palliative (support groups, in home assistance, education events).
Huntington’s disease, a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s simultaneously, has NO CURE and slowly progresses over 10-20 years.
I believe it is vital for Huntington’s disease families to connect with a Center of Excellence to address issues as a family’s HD journey changes. The interdisciplinary team at the COE has a discipline/medication for just about every symptoms that occurs in HD patients.
An example: People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.
To address swallowing issues a referral can be made to a speech therapist who can help the patient and family address it.
To celebrate Huntington’s Disease (HD) Awareness Month, Stanford Center of Excellence is hosting a Virtual Education Day on Saturday, May 7th from 8:30 a.m. to 12 noon. Dr. Sharon Sha, MD, MS, and her team at Stanford Center of Excellence in Stanford CA, is heightening awareness of the disease during HD Awareness Month. She and her colleagues will present current information on Huntington’s disease to the HD community everywhere. #LetsTalkAboutHD
When my three (3) sisters-in-law were struggling with Huntington’s disease (HD), in the 1990’s, there were few neurologists who were experts in Huntington’s disease and other movement disorders.
Today, there are 54 Huntington’s Disease Society of America (HDSA) Centers of Excellence across the U.S. with doctors specializing in movement disorders like HD. The HDSA San Francisco Bay Area Affiliate has partnered with two local Centers of Excellence, Stanford and University of California San Francisco Medical Center, to heighten HD awareness so HD families can find their way to these HD clinics where they will have support from an interdisciplinary team.
Louise Vetter, CEO and President of the nonprofit, Huntington’s Disease Society of America (HDSA), has made increasing the number of HDSA Centers of Excellence, in the U.S., as one of her priorities in her 10- year leadership at HDSA. Louise said, “We are deeply committed to helping families affected by HD access experienced care.”
In 2020, HDSA Centers of Excellence (COE) program expanded to 50 Centers from 47 in 2019, and from just 20 in 2015. The HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing comprehensive care.