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Huntington disease (for .................)

DAZ|Studio People posted on Aug 21, 2010
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Description


Please read Last week I started with new extra volunteer work. It’s with people that have Huntington disease. Huntington is a genetic disorder, which affects muscle coordination and can lead to dementia. Since it’s a strong genetic disorder it means any child of an affected parent has a 50% risk of inheriting the disease. We went swimming with some patients since that relaxes their muscles and mean less weight. It so great to see the excitement when walking (with wheelchairs) to the special pool. When they’re in the water you feel and see how much they enjoy it. Also 2 family members were there to help and spend some quality time with their loved ones. After we returned to the ward I ended up speaking to a family member. She is a young daughter of a patient. We did a cup of coffee and smoke while just speaking a while. Different topics like genetic testing, marriage, kids but also her mother’s old hobby painting came up. Some people say how sad or tend to slowly fade away when a person gets seriously sick or has severe accident. That young women said some words to remember “pity or sorrow we don’t need. Tread us normal like a person just respect our limitations”. Next week we have Pancake Day. Sure it will be fun to make and eat pancakes with patients and families. Big hug and thks looking and for reading Stephan

Comments (35)


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J5ive

12:52PM | Sat, 21 August 2010

Thats Wonderful!!

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Roywig

12:53PM | Sat, 21 August 2010

Well done Stephan for helping people with your voluntary work.

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chasfh

12:57PM | Sat, 21 August 2010

You truely are one of the best Stephan. If only more would help out like that, maybe this world would be a better place. Superb image and Dedi, my friend!

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brycek

1:02PM | Sat, 21 August 2010

Nice image and a truly wonderful thing to do!!

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anitalee

1:11PM | Sat, 21 August 2010

Great work

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Rainastorm

1:25PM | Sat, 21 August 2010

Stephan, this is such an awesome story...your a wonderful man my friend. You have made some people so very happy and helped more than you know. As for what the lady told you, I completely agree. When I worked at the school with the kids in Special Ed they were always looking for volunteers to help out. My only problem was getting attached to the kids, especially one little girl I had in my class, Courtney. She was autistic among other things wrong with her, but I swear she was a little angel...miss her terribly. I encourage everyone to get out there and volunteer, even if its just to hang with them for a half hour. You wouldn't believe how much it helps my son just having his friends visit once in a while. He may not be able to express his appreciation, but you can see it in his eyes.

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2121

1:32PM | Sat, 21 August 2010

Wonderful Stephan.....all of it. If we all spared the time to help others, to understand their needs, to give that rare gift...a smile to someone..then how wonderful would this world be ?. Thanks for sharing.

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UteBigSmile

1:49PM | Sat, 21 August 2010

Stunning image for a sad theme, which could concerns us all, who knows?!? My very deep respect for this volunteer work dear Stephan, just people with a heart on the right place, can manage such a great work and I knew that you have your heart on the right place!!! I wish you all the best for this hard job and wish you a very pleasant evening, hng's Ute

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pspworkshop

2:02PM | Sat, 21 August 2010

Echt te gek Stephan!!! En je doet goed werk hier mee.

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tryky5carla

2:06PM | Sat, 21 August 2010

SUPERB SCENE AND VERRY INTERESTING PRESENTATION, THANK YOU !!!!!

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RG19

3:13PM | Sat, 21 August 2010

First rate educational imagery!!! Super work!!!

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T.Rex

3:40PM | Sat, 21 August 2010

Huntington's chorea is a genetic degenerative disease of the caudate nucleus in the basal ganglion group of the brain which controls "background" movements. It unfortunately leads to death if untreated. There is a new medicine being tested called ACR-16 (or "Huntexin"), and a second one under development called OSU-6162. ACR-16 is in phase 3 testing and should be on the market within 2 years. This information is from Prof. Arvid Carlsson, Sweden's Nobel Prize winner in medicine who is working with the development of these drugs against Huntington's. I spoke to him a few weeks ago to help my brother's wife's best friend, who is starting to show symptoms of the disease. Strange coincidence that you post this image and message here, and at this time! As an anatomist, I have lectured neuroanatomy for many years, and Huntington's was one of the diseases taken up on the neuroanatomy course. Best of wishes to you and to your patients! Your image really captures the situation AND the emotions - good job! :)

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mgtcs

3:56PM | Sat, 21 August 2010

You are the best Stephan, what a marvelous image and dedication, You have a truly noble heart, all my respect my friend, thank you for this wonderful work and for making me believe more in human beings!

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mixart

3:57PM | Sat, 21 August 2010

Outstanding Stephan. That is very rewarding volunteer work you do . the kind that material riches could never compare to. You Are Awesome ! ! ! ! !

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magnus073

5:59PM | Sat, 21 August 2010

Stephan, I am so proud of you my friend for this wonderful and thoughtful dedi along with your volunteer work to help out those in need. I was very moved by your story, and will put them and their families in my prayers.

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flavia49

6:03PM | Sat, 21 August 2010

great image!! thanks for sharing!!!

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bazza

6:56PM | Sat, 21 August 2010

Lovely image Stephan and how wonderful to hear that you have volunteered do this. I guess there is always organisations looking for more and more volunteers. It is a noble and wonderful thing that you have decided to do.. I know my son is looking to do volunteer work in the community and we were discussing last week what he might be able to do. Thinking along the line of the St John's Ambulance, this was one area we hadn't thought of.. will discuss it with him..

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zil2008

7:59PM | Sat, 21 August 2010

What a fantastic render of what you are seeing and feeling since working with these courageous people. So glad you are enjoying working with this organization. Hugs Liz

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Faemike55

8:26PM | Sat, 21 August 2010

I am proud to call you friend! Wonderful image and narration! Thank you for your inspiration

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Cimaira

10:15PM | Sat, 21 August 2010

What a moving story and moment. Bravo to you for volunteering! Excellent image and I love the joyous expression on the young womans face, beautiful work.

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Savage_dragon

1:28AM | Sun, 22 August 2010

I have 2 god-children with Huntington's. Thanks so much for helping. ")

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P3Design

1:35AM | Sun, 22 August 2010

Such a great scene, so well composed and what a most great work you do Stephan! Heel mooi van je dat je dit werk doet :)

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Mondwin

3:46AM | Sun, 22 August 2010

Thanks for sharing this.....bravissimo:DDD.Hugsxx Whylma

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renecyberdoc

4:02AM | Sun, 22 August 2010

a very precious and wonderful work you do dear stephane,as a friend of mine who works with dolphins with children. very very important and my heart really goes out to you for this.

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Seven

7:15AM | Sun, 22 August 2010

Very touching image and words Stephan. People with such challenges in life really make us stop and think, what we thought were hardships are really very minor issues. Wonderful work :)

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Seaview123

11:19AM | Sun, 22 August 2010

Great work on this image, Stephan, and thanks for all of the information on this terrible disease. Very informative.

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NitraLing

11:27AM | Sun, 22 August 2010

Quite an eye opening dialogue!...touching image and the work you do is wonderful!!!!! :)

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jmb007

4:51PM | Sun, 22 August 2010

beau travail!!!

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pixeluna

9:50PM | Mon, 23 August 2010

Such a touching image, Stephan. Your work and effort helping them out is such a blessing to them, and at the end you'll reap your own rewards. A great dedication and a powerful image!

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Magick_Lady

6:29AM | Wed, 25 August 2010

een helpende hand is altijd fijn en ik ben zeker dat je daar ook excellent werk verricht :)))))))))))))))

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