Convenor HD Awareness Orange and Orange HD Support Group
Community profile – Orange is leading awareness raising
Q.) What do you like about Orange?
A.) I have lived here all my life, not having the opportunity to go away to study whilst Mum wasn’t well, and I was her main carer. Orange has a strong sense of community and a vibrant spirit. As much as Orange is moving forward as a city, a large country town at heart still lies within.
Q.) Tell us why you set up the Orange HD Support group.
A.) As I decided to set up the Orange support group as a way of connecting rural families. unless you have experienced Huntington’s Disease, it is extremely hard to explain exactly what it is like and how it affects, well ….. your whole existence. I want our hd families to know that there is support for them, whether they come to the meetings monthly or less for those who travel far, but a sense of belonging & love lies within these families who are going through something so devastating, and it is just so lovely for them to sit with those who know exactly what you are going through, or have been through,or are about to go through.
Q.) What barriers do you think families face in your region?
A.) There are many barriers. Most important is a lack of awareness. unfortunately, HD does not have a celebrity ambassador, and so it is us little people getting the word out about the grave effects hd has on us and our families. I quite often feel the roles change when I step into the Doctors, nDIS, OT, Care facilities and the like, where you are often the one educating these specialists rather than getting the help needed, so there’s a lot of frustration within these families about this. another barrier is not having a social worker who understands the many facets of HD, from little things like the lack of motivation to more complex issues around psychological changes. I would love a social worker with HD experience to do an in-service with social workers in our areas, even by video-conference.
Q.) How does Orange raise awareness for HD? and why is this important?
A.) through hd awareness Orange Inc., our little association is committed to providing awareness & education in Orange & the Central west area. I am quite amazed whilst selling raffle tickets that we can have 6 people in an afternoon telling me they knew someone, or cared for someone with hd. I am getting the picture that Huntington’s Disease is more well-known than I thought. However what Huntington’s actually IS, not so much. I am working with Huntington’s NSW ACT to provide information packs which HA Awareness Orange will gradually distribute to every medical practice in the region. I want to deliver these in person along with an in-service if they will have me! I then plan to rejig the packs a little to provide to carers & Care facilities and to legal professionals.
We also have several events each year, from the High Tea 4 HD to our redhead hunt4hd ginger pride Festival. I also tell my story to community groups such as Rotary & Inner Wheel. It is important that our HD stories are heard. We have the right to as much support as people with other diseases, and the more we talk about HD, make noise, share pictures, join events etc., our words and noise will start to make a difference, and I believe it already has.
Q.) Why do you choose to be a member of Huntington’s NSW ACT?
A.) I choose to be a member so that I can keep up to date with what is going on around NSW & ACT, and the fabulous things that are happening all over the world. I also feel that it is important to be a member, so the association gets feedback on how we families are feeling and what is needed in our areas. the association is there for the families, we too need to be there for the association.
