Teva to use social media to help manage Huntington’s disease | Chorea is the focus of the new ‘Honestly HD’ website and Twitter channel
Pharmaceutical company Teva is taking to social media to help people with Huntington’s disease (HD) improve management of chorea, a hallmark motor symptom that around 90% of patients with the neurodegenerative disease will develop.
The company, entirely Teva Pharmaceutical Industriesestablished a website dubbed Honestly HD to offer information and resources to help people with Huntington’s disease better understand chorea. Honestly HD also aims to prepare patients and their caregivers for what to expect from this symptom – which typically manifests many years after the onset of the disease – and others.
There is also a new Teva Twitter channel, of the same name, for HD patients. It seeks to further support people with Huntington’s disease and build on the resources available through the Facebook Community Honestly HD. There, members can share personal stories and their experiences with the resources and medications they use.
It should be noted that Teva is the developer of Austedo (deutetrabenazine), an approved treatment for chorea.
All of these social media platforms seek to improve Huntington’s care and help patients prepare for discussions with their doctors about preserving their independence as the disease progresses, according to Teva.
“The progressive nature of HD can create a sense of isolation for patients and their families,” Michelle Roberts, senior director of patient advocacy at Teva, said in a statement. company press release.
“Our hope is that in addition to providing information and resources to help manage symptoms of chorea HD and plan for the future, Honestly HD fosters a community of support and inspiration so that patients and their families don’t feel alone,” said Roberts, adding, “Honestly, HD underscores our commitment to supporting patients as they face the many complex challenges of living with a degenerative disease and hopefully providing them with concrete steps they can take to potentially reduce the burden of disease.”
In addition to providing information about Huntington’s disease and chorea, the new website offers steps to help families decide how and when to treat this common symptom. There’s also a Huntington discussion guide to prepare for doctor visits and inspiring stories from patients and their care partners.
Huntington’s disease is characterized by uncontrolled movements, loss of cognitive abilities and psychiatric problems. The disorder affects around 2.7 in every 100,000 people worldwide, including some 30,000 in the United States, according to estimates.
A common symptom that can significantly affect patients’ daily lives, chorea usually occurs in the middle stage of the disease and lessens in advanced stages. The condition is characterized by jerky movements – involuntary muscle contractions that are usually brief, irregular, but seem to flow from muscle to muscle.
These contractions are thought to result from an excessive release in the brain of the neurotransmitter dopamine, a chemical responsible for movement and many other basic functions.
Teva’s Austedo therapy is approved by the US Food and Drug Administration (FDA) to treat chorea in Huntington’s disease. The therapy works by blocking the release of dopamine.
At the same time, other treatments, including the candidate valbenazine, are being developed to control the movement disorder. Earlier this year, the FDA designated this experimental treatment, by Neurocrine Biosciences, as an orphan drug. This status is granted to therapies likely to improve the medical management of rare diseases.
“There’s so much to know about HD, which can lead to feeling overwhelmed and confused,” said Victor W. Sung, MD, director of the Center of Excellence at the Huntington’s Disease Society of America in Alabama.
“While there is no cure for HD, many symptoms can be managed, which helps alleviate some of the challenges of living with the disease. Early treatment for chorea, for example, can help you stay independent longer,” Sung said, adding, “Honestly, HD provides patients and families affected by HD with a central place to access information and useful resources, as well as to learn about the experiences of others. feel a sense of community.