Huntington's Disease Society of America
Hi my name is Marion Louis Phillips, I am 46 years young. I was born in Rhode Island and now currently live in Florida. I come from a rather large family, I have 12 siblings! My mother is one of 6,one passed at child birth; the eldest did not contract the gene the other four were diagnosed with Huntington’s they have all passed all except my mother which is currently in a nursing home in Virginia. I have five wonderful children and 6 beautiful grandkids. I was just recently diagnosed two years ago with Huntington. My doctors started me on medication and it has showed improvements! Before I was diagnosed my symptoms included uncontrollable jerks, difficulty swallowing (to the point that I had my family blending my food, and drinking out of a sippy cup), and falling down. Of course the medicine didn’t work right away and I felt a little discouraged but I kept on taking it and about three months after being on it my family and I have seen drastic improvements. It makes me feel great that this medicine is helping so I can be around a lot longer to enjoy watching my children and grandkids grow! * I also have my amazing husband to reassure me that everything will be alright and show his support to me; shower me with gifts to make me feel extra special, it’s a hard illness to deal with and see a loved one go through it so I’m so thankful he is sticking by me all the way! I just recently lost a close cousin of mine from Huntington’s, she was such a sweet beautiful woman, her family didn’t show concern or love to her that’s why I made it a point to go and spend time with her each week to show her that she does have family that’s loves and cares about her. I told her about the medicine which she started taking a few months before she passed away it was too late, she passed a day after my birthday at the young age of 45. Huntingtons is a horrible disease and my family and I pray for a cure!
*This reference refers to Marion's personal experience. Every individual should speak with their own physicians to determine if a medication approved for people with HD is appropriate. Results will vary from individual to individual.
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