Thursday, 18 June 2015

Raising Hope And Awareness for Huntington's Disease One Smile At A Time

Erin WadeElvis and Redline Show coming up Saturday Night
It seems that awareness doesn't come about for any given topic until it becomes relevant to us, or to our situation. Until it's standing right beside us affecting us, or someone we care about, it is only then that we seem to find the need to learn more, to seek solutions and support.
I recently had the opportunity to learn about a young lady living with Huntington Disease. 23 year old Erin Wade is no stranger to the challenges and adversity that come with living with HD.
HD1Erin was just 17 years old when she received her diagnosis for a disease that took her father's life when she was in her last year of high school, and had taken her grandmother before that. Erin's Grandmother already had children and grandchildren by the time she was diagnosed. Of her 5 children, 4 were diagnosed with HD. She passed in her 70's. Erin's Dad was only 53.
While many would have chosen to hide from the possibility, Erin sought to be tested. Erin received the devastating news that she too was positive for HD, and since her Cag count (cytosine-adeninequanine) was high, her mom knew she would begin having symptoms even earlier than her father had. And so it began..
Erin loves trips to the mall, going to movies -- horror movies are her favourite and she likes TV shows like Criminal Minds, 18 and Counting, and Say Yes to the Dress. She loves story movies, the color pink, candy, and McDonalds. She enjoys going out for dinner and hanging out. By all accounts her list sounds like many young women of today.
At one time Erin played rugby, volleyball and enjoyed the company of many friends. Now in a wheelchair, unable to walk and no longer able to do many of the things she'd previously enjoyed, old friends have moved on. Though she is unable to care for herself, she is very aware of her surroundings.
Erin also lives with Ulcerative Colitis which sees her undergoing infusions every 8 weeks. She also has Obsessive Compulsive Disorder. She can no longer dress herself and has limited motor skills. Her speech is slurred making it more difficult to understand her. She has seizures. She has to be monitored when eating to ensure she doesn't choke. Hopes and dreams of a future wedding and children have been taken. Erin's mom Cindy left her job to be home and care for her daughter when symptoms progressed and Erin needed full time care.
Erin's good friend Leigh Bursey tells EON-TV that when he met Erin she had already been diagnosed with her condition but he says you would never have been able to tell. He spoke of her warmth and beauty, her outgoing personality and of course her functional legs.
Leigh tells of the transition to now being confined in a wheelchair and having difficulty articulating much of what she might be feeling.
"A lot of who she used to be seems to get lost in the translation.. Except her heart," says Bursey. "In fact , in that department Erin is stronger than ever. Her will to face this disease, keep those important to her close, and to stand on her own two feet has kept her youthful and kept her family and friends in good spirits."
Like many of Erin's friends, family and supporters, Bursey has rallied in support of a variety of fundraisers held by the dynamic mother-daughter team raising support and awareness for HD and Juvenile HD. With such events under their belts such as an ALS Ice Bucket Challenge inspired "Pie in the Face" Challenge for HD, "Bowling for Erin," and a chili cook-off complete with performances from a variety of late great performers (or at least great local stand-ins).
The latest opportunity to support the cause is just a few short days away. There is still time to get your tickets for the Elvis and Redline Show being held Saturday, June 20th, 2015. Tickets for the VIP 3 Course Dinner are all sold out but tickets to the show are still available for $25 per person. The show starts at 7:30 PM at the Brockville Convention Centre. The bar is fully stocked, and open to the public. Guests can look forward to a silent auction, 50-50 draw, and door prizes. All proceeds are to support Huntington's Disease research and development.
To get your tickets please contact Cindy at 613-498-2777 or e-mail moore179952@hotmail.com.
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The Huntington Society calls HD a genetic brain disorder that destroys lives and likens it to being like having Alzheimer's, Parkinson's and Schizophrenia all in one disease. One in 7,000 Canadians has HD, but one in every 1,000 Canadians is touched by HD in some way, whether they have the disease themselves, look after someone who does, or have a friend or relative with it.
Symptoms can include emotional turmoil (depression, apathy, irritability, anxiety, obsessive behaviour), Cognitive loss (inability to focus, plan, recall or make decisions; impaired insight), Physical deterioration (weight loss, involuntary movements, diminished coordination, difficulty walking, talking, swallowing).
While there are significant variations in symptoms, not every person will have all of the symptoms to the same degree. Symptoms also vary with each stage of the disease.
Huntington's Disease has been a part of Erin Wade's life from a young age. Despite everything that it has taken from her, her bright and cheery smile never seems to leave her face. Her friends and family take heart in that, knowing that things could always be so much worse. Erin's Mom Cindy credits that very smile for giving her the strength to carry on, and keep going.
"Erin continues to defy logic and fight her prognosis. She is one of many facing this fight every single day. We have an opportunity to help her. Each of us is doing our part, and you can too." says Bursey. "Let's fight this now so our friend Erin can be young and adventurous.  Let's fight it for everyone else affected by this disease who no longer has that opportunity."
To learn more about Erin and her journey visit http://erinshdjourney.tumblr.com/ or http://jhdkids.com/erin/. To learn more about Huntington's Disease visit the Huntington Society of Canada http://www.huntingtonsociety.ca/ ; e-mail info@huntintonsociety.ca or call 800-998-7398.
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