A Proactive Approach to Huntington’s Disease
It is time for a paradigm shift in the Huntington’s Disease community. Those at risk and those with the disease are following strategies to live a healthy lifestyle now and signing up for clinical trials so that they can benefit from the treatments that are on the horizon. Despite the new optimism, virtually every description of Huntington’s Disease on a medical site focuses on the multitude of possible symptoms and informs us that there are no treatments and no cure for the disease. No wonder so many members of our community are stressed, overwhelmed, and wishing they could go into denial!
The old approach fails to capture the successes that patients, physicians, and researchers are having right now and it overlooks the many reasons we have to hope for a better future. The Lighthouse Cornerstones provide a proactive approach to dealing with Huntington’s Disease.
The cornerstones of the approach are:
- A healthy lifestyle – evidence based ideas for healthy living that may postpone or delay onset and keep us in better shape for future treatment. Information is provided on diet, exercise, mental stimulation, and socialization.
- Medical empowerment – knowledge is power and learning about symptoms and their treatment and management can help you, your doctor, and your family craft a better quality of life. Following the progress of the research identifies promising medications and supplements that can be taken now that may slow onset and progression.
- Community – no one needs to be isolated. Seek out support groups associated with the HDSA or your local hospital. Join Internet forums, discussion lists, and chats for families dealing with HD. Share information and receive support. Join with others to advocate for unmet needs.
- Planning for the future and getting help - those at risk for Huntington’s disease need to plan ahead so that they have all the disability, life, and insurance they need. Learn how to deal with Social Security and other bureaucracies to get the services you are qualified to receive. Seek help when you need it.
When the Lighthouse was founded in 1996 by Jerry Lampson, an engineer whose wife Peggy had Huntington’s Disease, Haldol was considered the drug of choice. Treatments for symptoms consisted of off label drugs tested on other populations of patients such as those suffering from depression or schizophrenia. There was only one Phase III trial being conducted – for CoQ10 – and that remained true for the next twelve years. Families were isolated as they worried about stigma and discrimination and people at risk tried to avoid thinking about the disease unless they were confronted with undeniable symptoms since they believed there was nothing to be done.
Things are changing rapidly now. Thanks to advances in research and community advocacy, there are better treatments available for symptoms, several drugs and supplements are in Phase III clinical trials with more than two dozen coming along in the pipeline. Therapeutic approaches are being developed that could result in a virtual cure. Working with animal models, researchers can now use short interfering RNA to stop the instruction to make the HD protein from being carried out. Stem cell research is being pursued to heal damaged cells and replace lost ones. We are getting closer to clinical trials in these areas and in the meantime we can look forward to combination treatment to delay onset and progression as more and more drugs move through the pipeline successfully. Not all will do so because cell models are not living organisms and mice are not people, but some will be found to benefit HD patients. There’s a light at the end of the tunnel.
As a result of early efforts by founder Jerry Lampson and the Lighthouse community as well as by Dr. Lavonne Goodman and the Huntington’s Disease Drug Works, the patient community as well as those at risk and caregivers have been benefiting from supplements and an anti-aging, heart healthy lifestyle. The Internet has brought people together and we have accomplished much in the way of mutual support and advocacy. And, thanks to HD warriors like Phil Hardt, thousands have prepared better to minimize the inherent devastation of HD and have qualified for Social Security Disability on their first submissions so they are able to pay bills, do more, and enjoy a higher quality of living than those a decade ago were able to.
Huntington’s Disease today is experienced far differently than it was a generation ago and those of us associated with the Lighthouse expect ours to be the last generation to face it without significant treatments. Years ago we waited for researchers to ‘discover’ the cure. Today we are keeping ourselves as healthy as possible, looking at the best scientific evidence for what we can do now to delay onset and slow progression, and partnering with researchers as clinical trial participants to bring about a better future.
The Lighthouse is an HD family effort, not a medical one. We attend research conferences, talk to researchers and doctors, and study journal articles to bring you summaries of the latest studies and review the best evidence we can find but it’s up to you in consultation with your doctor to decide what is best for you.