Maintaining Your Relationships
Almost as personal as the decision to be tested in the first place. This can be even more apparent during the in-between years when you could be years away from any signs of the disease or decline in your health. It could be that you value privacy and would just rather not share your HD diagnosis with any more people than completely necessary.
“For someone who has not wanted genetic testing for many years, we may Huntington’s disease is caused by an inherited defect in a single gene. To date, there is no cure for the disease and no way to prevent its onset.
But here are some ways that you might start to help someone you care about. It is so important that people with HD have friends and family that care about them, and just being there to help them forget about their HD for a while. Together, people with HD and their caregivers are a powerful team against HD! Our goal is to survey the rapidly growing scientific literature on HD and to present this information in a web source.
We emphasize that we are neither medical professionals, nor are we affiliated with the researchers and laboratories mentioned on our pages. The information we present is intended for educational purposes only and should not be construed as offering diagnoses or recommendations.
Dating someone at-risk?
What are the major effects of the disease? How is HD Inherited? At what age does HD appear?
The European Huntington’s Disease Network (EHDN) commissioned an date of publication, type of intervention, daily dose (both of the active.
I was recently invited to talk about my column on Help 4 HD Live! The host, Lauren Holder, asked me how the revelation that I am a gene carrier has affected my relationships. My friends were sad to learn my news, but remain incredibly supportive. I also have been fortunate with my romantic relationships. Right after I received the results confirming that I was a gene carrier, I started to see someone new.
I mentioned in a previous column how caring he was when I told him about my status on a particularly rough day. I am bluntly honest in my personal life. I discovered that my extreme honesty — as some might call it — was an unusual trait when on our third date, I showed my now-boyfriend the Netflix special with comedian Daniel Sloss where he talks about the futility of love. Until this year, the risk of my being gene-positive was merely a chance.
Now, with my confirmation as a gene carrier, anyone I date no longer has that luxury.
About Huntington’s Disease
It can make a big difference if you know what help is out there and get the support and information you need. It can also be hugely helpful to meet others in the same situation. Sources of support. They are there to support you and the person you are caring for.
Think of the people who are either suffering from HD or caring for someone with HD. Report this Content. This article has not been reviewed by.
The European Huntington’s Disease Network EHDN commissioned an international task force to provide global evidence-based recommendations for everyday clinical practice for treatment of Huntington’s disease HD. The objectives of such guidelines are to standardize pharmacological, surgical and non-pharmacological treatment regimen and improve care and quality of life of patients. A formalized consensus method, adapted from the French Health Authority recommendations was used.
First, national committees French and English Experts reviewed all studies published between and included dealing with HD symptoms classified in motor, cognitive, psychiatric, and somatic categories. Quality grades were attributed to these studies based on levels of scientific evidence. Provisional recommendations were formulated based on the strength and the accumulation of scientific evidence available.
When evidence was not available, recommendations were framed based on professional agreement. A European Steering committee supervised the writing of the final recommendations through a consensus process involving two rounds of online questionnaire completion with international multidisciplinary HD health professionals. Patients’ associations were invited to review the guidelines including the HD symptoms. Two hundred and nineteen statements were retained in the final guidelines. We suggest to use this adapted method associating evidence base—medicine and expert consensus to other rare diseases.
HD is a rare neurodegenerative disorder of the central nervous system, with a genetic autosomal-dominant inheritance, that first involves basal ganglia caudate nucleus and putamen and results from expansion of a CAG trinucleotide repeat in the HTT huntingtin gene: alleles with 40 or more repeats are fully penetrant. The disease is characterized by motor, cognitive and psychiatric disorders, and a range of somatic symptoms.
The study, published in Clinical Genetics , also suggests that individuals who have chosen not to be tested can benefit from supportive counseling, which is not usually offered. Inheritance is autosomal dominant: only one copy of a mutated HD gene is needed to pass on the disorder, thus the chance of inheritance is 50 percent. A person inherits two copies of every gene, one from each parent. A parent with a defective gene can pass on either a mutant or healthy HD gene.
The disease produces progressive degeneration of nerve cells in the brain, which affects the ability to move and think, and often results in depression and other psychiatric disorders due to functional changes in the brain. To date, there is no cure for the disease and no way to prevent its onset.
Juvenile-onset HD is really rare, but a new study has helped us understand what the symptoms are and how they change over time. This is really important and in time will help us work out whether huntingtin-lowering and other treatments work in kids. Shortly after the HD gene was discovered, researchers identified a strong relationship between how old people were when symptoms began, and the length of the abnormal DNA stretch in the gene. There are lots of exceptions, but in general , the more CAG repeats there are, the earlier the symptoms tend to start.
About 1 in 20 people with HD have a repeat length of about 60 repeats or more, which usually causes the symptoms to start before the age of That means juvenile HD is a rare form of a rare disease — so even neurologists are unlikely to see more than one case in their career. Our knowledge of JHD tends to come from the experiences of a few neurologists who have looked after several cases.
Although a positive gene test or diagnosis of HD will inevitably change the nature of some relationships, it is important to remember that you are still the same person despite HD. Some people may not know how to respond to this change while others may be more understanding. Despite this, there are ways together that you can deal with the strain HD places on relationships through the following:. Communication is vital in dealing with the ups and downs that are inevitable with HD.
Talking openly and letting everyone have the chance to express how they are feeling are important aspects of staying connected to those important to you.
Should I marry a guy who is suffering HD (Huntington’s disease)? I really loved him. intelligent, generous, loving, funny, someone who had a strong work ethic, loved children, and Dating and Relationships: I have chronic pancreatitis.
One of the major issues of course is stress , which can come from many sources and has many effects for general discussion of stress and HD, click here. A major source of psychosocial stress associated with HD comes from predictive testing which became available in the United States in However, less research has focused on the psychological impact that predictive testing may have on those at risk for HD and their partners, family and friends. This research is important because HD affects many more people than just the person who has it.
Moreover, the hereditary nature of the disease can also lead to difficult questions about reproduction and about the possibility of other family members having the disease. Fortunately, researchers are now focusing more of their attention on predictive testing and its effects on the couple relationship.