Together, we can change Huntington’s - forever!

Hello, my name is Rebecca, firstly I’d like to thank you for taking an interest and looking at my blog on Huntington’s disease. Though once considered a rare disease, it is now one of the more frequently encountered hereditary diseases. Huntington’s is a brain disorder that affects a person’s ability to think, talk or move. It causes the brain cells to deteriorate.

Right now in the UK an estimated 30,000 people have this disease. At least 150,000 others have a 50 percent risk of developing Huntington's disease, and thousands more of their relatives live with the possibility that they, too, might develop Huntington's disease. Because individuals affected by Huntington’s disease need extensive care from families and loved ones, this devastating condition has an effect on a wide circle of people close to the person who is ill emotionally, socially and economically. Huntington’s affects both men and women and all ethnic groups. Everyone between the ages of two to eighty onwards can develop this disease. Usually this disease has a gradual decline over a period of ten to twenty five years, typically leading to complete dependence on others. Approximately 200,000 Americans are at risk of inheriting the disease from an affected parent. Those who have a parent with HD have a 50 percent (i.e., one in two) chance of inheriting the defective gene. In other words, passing the HD gene to a child is random; some parents may not pass the gene to any of their children; some pass it to all of them. HD does not skip generations. Therefore, if a child does not inherit the gene, they cannot pass it on to future generations. Every person who inherits the HD gene will eventually develop the disease if they don’t die of other causes (stroke, cancer, etc.) before HD progresses.

Knowing someone who has been affected by this disease and died has only shown me more how demoralizing this disease can be. The whole family has to support that one member and even though there is no cure, they must never give up. This is where Huntington’s Disease Association (HAD) steps in. They provide all the help and care needed to support families through this. HDA have family days and raise money to do so by running marathons. They advocate to get better known as they are not very well known at the moment. It is a great shame as they are doing amazing things and are aiming to achieve their goal – finding a cure. On their website - www.hda.org.uk - you can see all their fundraising events and all the work they are doing in aid of Huntington’s disease. They provide online help as well as help face to face. HDA give advice and support to those who need it. However they desperately need any help they can get as they are a completely voluntary organization and need as much help as possible. You can donate by clicking the ‘Donate’ button on their website, by post, in your will, in memory of someone of straight to them!

Joan’s story (not Joan in the picture): Joan had Huntington’s disease and many years ago was told she only had five years left of her life. She was living in a house which had many steps to reach it, not the most ideal house. Her husband had to do everything for her, feed her, dress her etc. Eventually a nurse from the HDA came to their house everyday to look after her. They kept suggesting that she stayed at the hospice but she never went. Soon the steps were too hard for Joan to walk up, even with her husbands help, so they bought a new bungalow. However, by the time they had packed she was too ill and had to be kept at the hospice. A few years later she was just a bag of bones and died. This was fifteen years after they had told her she only had five years left. This just proves that a lot of love and care can help those in need. Do not give up.

Thanks for reading our blog. I hope you have learned something and would consider donating. Please take your time to answer the questions below which will only take a few seconds of your time. If you would like to know even more or get in contact with the HDA themselves then feel free to visit www.hda.org.uk.

1. Did you know about Huntington’s disease before this blog?
2. Did you know about Huntington’s Disease Association before?
3. Have you learnt more about the disease and the HDA?
4. Would you now consider donating to the HDA?

Also would you please state your town and country (only if you don’t live in the UK)

Thank you,
Rebecca