Published: May 26, 2012 07:00 PM
Modified: May 21, 2012 07:48 PM
I am vice president of the Huntington’s Disease Society of America North Carolina Chapter (HDSANC). Did you know that May is Huntington’s Awareness Month? Please join us in honoring families struggling with HD here in North Carolina and across America.
Huntington’s Disease (HD) is a genetic, progressively fatal disease that causes uncontrolled movements (jerking arms/legs, difficulty swallowing/choking), aggressive/emotional disturbances (depression, bursts of anger), and loss of cognitive abilities (trouble driving, learning, making a decision).
An estimated 250,000 people in the United States have HD, and they have a 50/50 chance of passing it on to their children. HD has been described as a combination of “cancer, muscular dystrophy, and Alzheimer’s at the same time” (San Francisco Examiner).
I graduated from Appalachian State University in 1997. Since then I have lost several family members to HD. I tested positive in 2009. It is my goal to bring awareness, hope and help to those suffering. Working with HDSANC, our goal is to raise money to help families across the state by educating and advocating for the patient and family, providing support groups, and research. With increased awareness and support we will help to achieve the HDSA mission of eradicating this disease in our lifetime.
Currently I am enrolled in research studies at Duke. There are a few HD resources at Wake Forest, but that is all in North Carolina.
South Carolina, where I lost my mom, has nothing. It is sad to see the lack of medical care for HD patients there. People do not want to talk about Huntington’s; even within my family it is shunned.
We are not going to get very far acting like HD does not exist and by walking away from loved ones. Huntington’s patients need a voice so that the doctors, families, and patients are more aware. HD is a multilayered disease. Patients need a neurologist, psychologist, speech/language therapists, physical therapists – the list goes on.
In my mom’s final years she could not walk, talk, eat, drink, or get out of bed. It was horrible seeing her that way. She was there – I could see it in her eyes – but she could not communicate. I want the final years to be better for all families.
My journey now takes a different path. I am on medical leave from my job and have started on disability. This summer I hope to spend quality time and build closer ties with my kids. I will continue working with HDSANC as vice president. It makes me happy to continue my advocacy role with them. One of my most rewarding moments was when we met with Sen. Kay Hagan’s office to talk about the Senate Companion to the Huntington’s Disease Parity Act. Her liaison was moved to tears by our stories and we are thankful that Sen. Hagan signed the bill. We hope this will encourage other states to support the Parity Act, and I will continue to advocate for it. Currently we are requesting meetings with Sen. Richard Burr, but so far our requests have been denied.
We invite you to join us at one of our upcoming fundraisers: Applebee’s Flapjack Fundraiser Saturday, July 14, (Winston-Salem); Golf Tournament, Thursday, August 30, at the Crooked Creek Golf Course (Fuquay-Varina); Hope Walk, in late October (Charlotte); and our annual Hoop-a-Thon in late winter.
If you have any questions or would like more information about our group or Huntington’s Disease, feel free to contact me by email: email@example.com or visit our website at hdsa.com/nc
. If you would like to make a donation to our chapter please visit hdsa.org/ncch/ncdon.html
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