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There are fewer than 600 diagnosed Huntington's Disease patients in North Carolina, but doctors believe there could be many more who go undiagnosed for years. A new virtual care center promises better access to knowledgeable doctors and to help for families strained, financially and emotionally, by the fatal brain disorder.
Because Huntington's is inherited, most people find out they have it after someone else in their family is diagnosed. Will Brown of Raleigh found out six years ago after his brother was diagnosed.
"By process of elimination, we're quite sure it came from my father's side," said Brown. "But he died with no visible symptoms, so it really snuck up on both myself and my brother."
Experts say the onset of symptoms varies from person to person. Brown's brother, who is three years younger, is much more advanced in his disease. Brown, who is running his 33rd Marine Corps Marathon on Sunday, credits his continued good health to being informed about the disease.
"As soon as I decided to test, that's when I went looking for information," said Brown.
Dr. Mary Edmondson sees a number of HD patients in her psychiatric practice and at Duke University Medical Center. As part of the leadership team for the new North Carolina Center for the Care of Huntington's Disease, she is looking forward to having a single point of contact to offer patients and their families.
"The center is going to bring together professionals who have specific expertise, including movement disorder specialists, psychiatrists and others who can address the physical, nutritonal and language deficits of Huntington's," she said.
Edmondson said the number of specialists able to provide care has grown over the 28 years since she got involved, but they are scattered across the state. The center will offer access via the web as well as a telephone advice line to provide referral information.
Find out more about the new center at www.nc-cchd.org.
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By Michelle Miller on 11/03 09:06 PM
I have a dear friend who has been diagnosed with HD. Frankly and sadly, I had no idea about this disease until banged hard on my reality door. More information needs to get out in front of public, please. There are islands of people who are affected and suffering from HD-information, knowledge, exposure will promote understanding and positively bring them together. Please make getting the word out a priority. Thanks in advance.
By Chris on 11/02 02:20 PM
Please air this report. More friends and family of people with HD need to know where to turn to for support and advice, It will help people who may not know they have the disease seek treatment. This is an excellent report that needs to be more widespread. Thanks
By Liam Fitzpatrick on 10/30 01:51 PM
What great exposure to such a horrible disease. Thank you to Dr. Mary Edmondson and all she is accomplishing. As you have the ability and tools, please help bring greater awareness to HD, the power of public exposure and awareness is immeasureable, thank you .
By Harry Schrader on 10/29 12:49 PM
Lets take advantage of this opportunity to spread critical awareness; and offer much deserved assistance to those effected by HD. Publicizing the availability of medical expertise that will greatly influence the lives of patients and families alike paramount in this fight, so please run this story.
By Pam Lowe-Hope on 10/28 08:39 PM
My husband died in 2007 @51 years old from HD, his Mother & Brother also died from HD.The importance of getting the message out and getting the help to families who have no where to turn too, is like giving them a lifeline.The devastation of the diagnosis and living life with an HD patient is suffering in silence. There is power in knowledge and so very important to these families to get all of the information and support they can.
By John G Young on 10/28 06:14 PM
The need to diseminate the story and information cannot be overemphasized. It is of critical importance to so many people, afflicted and support, as well as the general public. Publicizing this information can benefit everyone and hopefully lead to more and better resources. Please!
By Frank Antonides on 10/28 12:49 PM
HD is a disease that is in need of greater Federal support in order to research and drive a cure.(Yes, Gov't spending.)In an effort to get this on the Federal Government's radar, more attention must be given at the local level. Your support in doing so is a tremedous help. Please air as soon as possible.
By Maureen Hickey on 10/28 10:54 AM
I think it is a fascinating approach to ensure that patients and their families have access to an extensive pool of resource and knowledge. Since it is believed that HD is widely undiagnosed, it is so important to get information out to the public to help spread information regarding warning signs, symptoms etc... We need to think beyond the conventional approaches to handling disease and treatment if an impact is going to be felt. Knowledge is power. HD families deserve access to the most up to date information available. Hats off to NC-CCHD
By Mark Ward on 10/28 10:01 AM
This is a story that needs more public exposure. The support resources for HD are available but limited and don't receive the exposure they deserve. Many people suffering may not know where to start to get the help they need. Presenting this issue to the public on a larger scale can help to drive the support that is needed to reach a cure. PLEASE air this report.
By john Canning on 10/28 09:50 AM
Huntingtons Disease is a deviatating disease for any family. By running this story can give families HOPE that they can find the help that they so desperately need.
By John Canning on 10/28 09:36 AM
This is a devistating disease that a lot of times is miss diagnosed. If you run this story you will help someone who is affected by Huntingtons Disease get the expert advise and attention that they need.
By Glen Snavely on 10/27 08:33 PM
HD is a disease that destroys lives and families. HD families in North Carolina will be well served by the NC-CCHD. This is an important story that needs to be told.
By tim canning on 10/27 06:17 PM
some guy named bubba just donated $5000. to nc cchd - in honor of our grand daughter. thanks bubba from the bottom our my heart. t
By Barbara Rogers on 10/27 03:03 PM
My father was misdiagnosed for years, and finally my mother saw a news story about HD. She knew right away that this was what he suffered from and took the information to a doctor. Having the information available to others is essential in proper diagnosis, treatment, and support.
By sam jackson on 10/27 10:46 AM
This is a story worth running,maybe 90% of folks who have HD had no Idea they were HD postive untill symptom took them to see there MD who may or may recognize HD .Running this story would be a great public service.
By Chris Young on 10/27 08:06 AM
This is an important story and an important event! Your news organization can help people in the community and state by airing this story and following up with periodic updates. Many HD patients and families throughout the state suffer in silence because they don't know how much help is available. As a resident of southern NC, I appreciate your organization making the effort to publicize this important event.
By Gentry Lassiter on 10/27 02:47 AM
The NC-CCHD is one of the ways people are beginning to innovate new ways to make the health care system work for special populations. My hat's off to the people of the center and those who are helping Huntington's patients and their families get the care they need.
By tim canning on 10/25 02:03 PM
did anyone miss the nc cchd / hdsa meeting at rtp this week end? there is a lot of positive news and help. www.nc-cchd
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