Aware of Huntington's Disease: Part 1
When we adopted our son, he came to us with his own challenges and strengths. He also came with a family history of Huntington's Disease.
Thus began our family's awareness of HD. We knew very little; it was rare, it was inherited. Beyond that, we didn't not know much. We asked medical professionals if we should have Lacy tested for HD when he was about 5 years old, but the answers were unanimously opposed to taking this step. Since there was no treatment, and no cure, there was no reason to burden our son with that knowledge.
What we know now is that although somewhat rare, HD is actually much more prevalent than once thought. While only about 30,000 people in the United States exhibit symptoms of HD, there are hundreds of thousands of family members living at risk for developing Huntington's Disease. And many more worldwide. Many doctors have never see anyone with HD, and have no idea how this genetic disease affects the body and mind. Finding someone familiar with Huntington's is often the most difficult step for people who live at risk.
Lacy was diagnosed with Tourette Syndrome at 9 years old. Our questions about this being the beginnings of HD were waved away. The neurologist we went to did not believe it was possible for a child to have symptoms. What we understand now, is that the "tics" were most likely the beginnings of chorea.
We immersed ourselves in learning about Tourette Syndrome. Still, in the back of our minds, we couldn't help but wonder whether the diagnosis was wrong.
Thus began our family's awareness of HD. We knew very little; it was rare, it was inherited. Beyond that, we didn't not know much. We asked medical professionals if we should have Lacy tested for HD when he was about 5 years old, but the answers were unanimously opposed to taking this step. Since there was no treatment, and no cure, there was no reason to burden our son with that knowledge.
What we know now is that although somewhat rare, HD is actually much more prevalent than once thought. While only about 30,000 people in the United States exhibit symptoms of HD, there are hundreds of thousands of family members living at risk for developing Huntington's Disease. And many more worldwide. Many doctors have never see anyone with HD, and have no idea how this genetic disease affects the body and mind. Finding someone familiar with Huntington's is often the most difficult step for people who live at risk.
Lacy was diagnosed with Tourette Syndrome at 9 years old. Our questions about this being the beginnings of HD were waved away. The neurologist we went to did not believe it was possible for a child to have symptoms. What we understand now, is that the "tics" were most likely the beginnings of chorea.
We immersed ourselves in learning about Tourette Syndrome. Still, in the back of our minds, we couldn't help but wonder whether the diagnosis was wrong.
I have a friend with a little boy in a similar state that their doctor just mentioned HD as a possibility. He is 10 years old. I told them about you and asked if they would like to talk with you. They are still thinking about it as they are reeling from all of it. Thanks for writing about it. I'll direct them to your blog. Blessings on both of you!
ReplyDeleteSarah we are certainly open to talking to your friends. You might also direct them to hdsa.org . They have a lot of free downloads. The book that helped me (and still does) is The Physicians Guide. It breaks down the syndrome in very understandable terms.
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