*It is important to discuss all treatment options with your doctor and other health professionals. The below advice is general and should not be taken as direct health advice.*
Since the discovery of the mutated gene in 1993, researchers across the globe have been working to find an effective treatment and a cure for Huntington’s disease. Although a cure has not yet been found, there are medications available and lifestyle changes you can make to help delay the onset and progression of symptoms.
In December 2017, Huntington’s disease made global headlines for a great reason: scientists had made a breakthrough in the hunt for a treatment. The drug, called Ionis-HTTRx, has been developed by researchers from Ionis and Roche, and it is hoped the drug will be able to lower the amount of huntingtin protein in a person with HD and that this may possibly slow down, stop or even reverse some of the symptoms of HD. Ionis-HTTR was tested for safety on 40 volunteers over a 27-month period. The trial results were published in a media release on December 11, 2017, with two important announcements:
- The drug proved entirely safe for humans, allowing researchers to plan for the next phase of testing – outcomes.
- Early indications are that the drug is effective in reducing the amount of huntingtin protein.
What researchers do not yet know is whether or not this reduction will have any effect on people’s symptoms. There is hope that by ‘silencing’ the protein, symptoms may be reduced, stopped or even reversed, but this is not yet known. The next phase of the trial, hopefully starting late in 2018, will investigate this.
Many people are hoping to get involved with the trial, but at this point there is no indication that the trial will be available in Australia. The best course of action for those located in Australia is to get involved with Enroll-HD, as any trial information or opportunities will come through there. To read the news articles about this new drug, visit our page of news about the drug trial.
Delaying & Treatment of Symptoms
Keeping fit and active is scientifically proven to help your brain stay healthy, so the more physical activity you can do, the healthier your body and brain will be. Eating well is also vital to keeping both the brain and body healthy. Just by eating right and exercising regularly, you can help to delay the onset or progression of symptoms. Keeping your brain active may also help, so do lots of puzzles like Sudoku.
There may be medications your doctor can prescribe to assist with chorea – discuss this with them to see what may work for you. Your doctor can also help you if you are experiencing depression or anxiety. These may be a symptom of HD, or they may be a separate illness, but they can be treatable, so make sure you discuss it with your doctor.
Although a difficult topic, quality palliative care is vital to ensure comfort and quality of life. Palliative care improves quality of life for those with life-threatening illness through the prevention and reduction of pain and other physical, psychological and spiritual problems. The Centre for Palliative Care Research and Education (CPCRE) is a consortium of organisations working with other agencies to provide high-quality care to people with life-limiting illness.