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thanks a lot for everyting! and unfortunately i go to find my mum at least once a months..instead my dad goes very often. and i'm really happy found this site! if you need help for italy traduction or other let me know!
In reply to Matt
Sparkle...
My son is now 6 years old. I get great support because I have made a network for myself. Honestly, there is not much HD support in the area I live in... but I got involved in the local chapter and started going to the National conventions and have a bunch of friends nationwide now. I am making a few more local connections recently, but mostly due to myself networking. Stinks sometimes... and other times... It is ok. I can't be thinking all HD all the time. It depresses me.
In reply to SparkleHi Marica,
It is great that you visit your mum when you can, it is not always easy to do so.
I'm so pleased you are happy that you've found this website and thank you so much for offering to help with Italian translations. We would love to have your help with translating HDYO into Italian!
Email me at matt@hdyo.org and we can discuss translation stuff further!
Matt
In reply to KataHi Cinn,
Welcome to the HDYO forum! Thanks for sharing your story. Glad you have found the tested positive section of the forum, where you can meet other young people who are going through similar situations.
May I ask how long ago it was that you got tested, and how do you feel now?
Take care,
Matt
I did the test two days ago so i am still feeling sad but i do feel some relief because it is hard to always wonder. I have been with my partner for 7 years and he is really helping me. He as seen my mother sick and he as even helped her eat and braught her on the wheelchair, he is an amasing person. In my case i did the test because i want to have kids that will not be sick. My mom started to be sick at 40 and she is now at the end of her life and she is 55. I will start being sick at the same age as my mom and now i am 25. I definetly see life now in a different way, i see life as more beautiful and to live it fully. I am from Laval Québec.
Hi Nancy,
Welcome and thank you for sharing your experiences. Often young people say that they feel quite surreal during receiving the results and those days and weeks after it. How would you say you are feeling about it all?
It seems like you had a clear reason for wanting to get tested, which is good. Is having children something you will now look to plan for?
It sounds like you have a really supportive partner helping you through this process, that can be so helpful. How is your partner doing after your results?
Take care and thank you for sharing.
Matt
I have known now for less than a week and I must say I feel a lot better already. My father, my sister and my friends all came to see me. It was my mother’s birthday today so I went to see her as well. My father has been taking care of my mom since the beginning and they have been married for 30 years. My boyfriend is actually doing pretty well with the news, he helps me a lot, and he is my rock. There is also a lot of hope with the research and I definitely will do my best to help in any way that I can. As far as having kids, we will be starting our family probably in one year, I will definitely come back to talk of that experience later on. If anyone as any questions please do not hesitate to contact me.
In reply to MattHi Nancy,
Glad that you are already starting to feel better after your result. It sounds like you have a lot of good support around you which really helps. It can take time though so perhaps allow yourself that time if you feel it is needed.
There is a huge amount of research happening, CHDI are putting lots of money into HD research and that is resulting in more treatments in the pipeline. They will need people in trials and observational trials like Predict-HD (http://en.hdyo.org/eve/predict) and Enroll-HD (http://www.enroll-hd.org/html/about?enrollsid=f06cf2a45fb4ca54507a6d91c2fa5572). If you want any more info on these things I am happy to help.
If you do decide to go through the process of having children we would of course love to hear your experience of that. It would be very useful for others thinking of going through the same process.
Take care,
Matt
Thank you for all the information. I will definetly think about all of this. HDYO is really an amasing site, it is an important step to healling. Have a nice easter week-end.
In reply to MattYou are very welcome Nancy, have a good easter too! HDYO is always here.
Take care,
Matt
