By Matthew Santamaria (msantamaria@hdsa.org)
Throughout his entire life, Huntington’s disease (HD) has been a memory that New York City resident Peter DeVore cannot seem to get rid of. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
He lost his grandmother to the disease and now his aunt is currently battling HD.
“HD is the club that no one wants to be a part of but as an individual whose family has been plagued by the disease, I’m a part of it,” said Peter.
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.
Currently, Peter lives with his three cousins. Last year, they ran the NYC Marathon for the #kiselickkrusaders team.
“I ran for my aunt, my grandma, and myself and other family members at risk,” said Peter. “My cousins and I were so grateful to so many people who helped raise money for the team.”
Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
In January, his aunt was hospitalized as the family’s fight with the disease took a serious turn. She is now in a care facility that is closer to her family.
“We are grateful for so much love and support from our community of family, friends, colleagues and others who have been there during the especially tough times over the last year,” said Peter.
Phil and his cousins currently serve on HDSA’s Greater New York Chapter Board and are continuing to raise awareness for HD.
“We are grateful for so much love and support from our community of family, friends, colleagues and others who have been there during the especially tough times over the last year,” said Peter. “Through the love and support of the HD community, family, friend, colleagues and others – it makes the dark times a little less dark.”
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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org
Throughout his entire life, Huntington’s disease (HD) has been a memory that New York City resident Peter DeVore cannot seem to get rid of. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
He lost his grandmother to the disease and now his aunt is currently battling HD.
“HD is the club that no one wants to be a part of but as an individual whose family has been plagued by the disease, I’m a part of it,” said Peter.
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.
Currently, Peter lives with his three cousins. Last year, they ran the NYC Marathon for the #kiselickkrusaders team.
“I ran for my aunt, my grandma, and myself and other family members at risk,” said Peter. “My cousins and I were so grateful to so many people who helped raise money for the team.”
Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
In January, his aunt was hospitalized as the family’s fight with the disease took a serious turn. She is now in a care facility that is closer to her family.
“We are grateful for so much love and support from our community of family, friends, colleagues and others who have been there during the especially tough times over the last year,” said Peter.
Phil and his cousins currently serve on HDSA’s Greater New York Chapter Board and are continuing to raise awareness for HD.
“We are grateful for so much love and support from our community of family, friends, colleagues and others who have been there during the especially tough times over the last year,” said Peter. “Through the love and support of the HD community, family, friend, colleagues and others – it makes the dark times a little less dark.”
###
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org