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Me & My Youth Worker

March 23, 2018

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

If someone had told me three years ago that I would have moved to DC and gotten tested for Huntington’s Disease I would have told them they were out of their mind. Even more so, if they would have told me that I would find a one of a kind social worker who would literally hold my hand through the most stressful experience of my life I would say HA HA YEA RIGHT. Well needless to say that’s exactly what happened. I moved to DC and got tested for Huntington’s and I didn’t do it alone. I had Chandler Swope to help me during it all and I can’t imagine what it would have been like to not have her during those late nights when the thoughts and fears plagued my mind, when my world seemed to be coming to an end.

Chandler and Chris

The one thing I really respect Chandler for was her ability to stay professional while ALWAYS making me feel like she was my friend. Our relationship started when she filled in for our regular facilitator who had to go on maternity leave. I was instantly drawn to her because she really seemed to understand the tumultuous life of someone living with Huntington’s. She instantly made me feel like I was in good hands when I finally went to Georgetown to start the testing process she made sure to meet with me every week for coffee or lunch and made sure I was ok and talking about things and not bottling up all of my feeling and emotions. Sometimes she had to pull them out of me and I would leave feeling better. We joke about one scenario where I said CHANDLER YOU DIDNT HELP ME TODAY. She replied CHRIS I NEVER SAID I WAS THE PERFECT SOCIAL WORKER…YOU DID.

Leading up to the RESULTS appointment I knew I wanted Chandler to be the one to give me my results. I didn’t want this memory that would be burned into my head to be given to me by some stranger. I wanted to remember her sweet voice for the rest of my life as the one who told me I had Huntington’s Disease. Of course, she obliged and made the experience as pleasant as she possibly could. I’ll never forget.

Chris B and his mum

Chandler continued to see me like clockwork after my results and I can’t say enough how vital her role in my life has been. I cried many tears on the phone with her at night or in the middle of the day whether we were on the phone or in person. She never wavered or made me feel like I had to suck it up. She is so firm and comforting at the same time. It’s a rare occurrence to have such a great support system, I’ve read other people’s stories about their journey through getting tested and they are heart wrenching. Not everyone has the support system that I’ve been so blessed to have. It hurts me to hear of people going through it alone. Chandler is helping so many people and at the same time and each of those people are feeling like they are her only client. I know that because I felt that way. I will forever be grateful for her and the role she plays for HDYO.

Chris Brown

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