The DysNet Digest: Inspiring stories, Interesting news

Posted on Friday 12th October, 2012

DysNet Digest
Often, people with limb differences experience feelings of isolation as they do not know anyone else with the same condition.  DysNet hopes to help change that by bringing people together on our RareConnect safe forum and by sharing news, resources and knowledge. 

Each week we find stories of people who do not let their disabilities prevent them from achieving their dreams as well as shared experiences and new research and we bring them to you (usually!) on a Friday. 

Here's this week's selection - enjoy!

9WSYR.com: Amputee shares inspiring journey with others facing similar struggles
A group of amputees from Central New York met with a man from California Wednesday to share their experiences and draw strength from each other. 

PiP: Poland Syndrome and Music
Mario Padovani was born with Poland Syndrome.  At a young age he was told by several piano teachers he would only play with one hand.  After 3 months of lessons he quit and began to teach himself how to play with both hands. 

Congenital Abnormalities of the hand:A short overview of Severe Symbrachydactyly and Nubbins
Charles Goldfarb, MD, the author of this blog, is an orthopedic hand surgeon at Washington University in St.  Louis specializing in congenital hand and upper extremity disorders. 

Douglas Bader Foundation: Huge Success for Junior Amputee Games
LimbPower held the inaugural Junior Amputee Games on 15th/16th September at Stoke Mandeville Stadium, and the lucky young participants were cheered on by their heroes Stef Reid and Gemma Collis fresh from their Paralympic success. 

DysNet: A day in the life of a person with limb differences
A a thorough investigation into the health of thalidomiders was recently published in Germany.  We are grateful to Heidelberg University's Institute of Gerontology for their meticulous research - we can all learn from their conclusions.  For an organisation like EDRIC, the report is useful in that it highlights how an individual's health can deteriorate when they don't have access to appropriate support, financial resources and comprehensive and appropriate care to alleviate the effects of living with limb difference

PiP: Parent's milestone in journey with Poland's Syndrome :
Over the summer, the day I have been waiting for since I discovered my beautiful son had Poland's Syndrome finally arrived.  He was coming up to his fourth birthday and we were driving along one day to the grandparents, a journey we have made several hundred times over the years and as we turned the corner to their road and he said to me "Why is my hand smaller than the other". 

Birth Abnormalities of the Hand and Arm: A very interesting article about Limb Formation
The upper limb forms from about 28 days of gestation to about 56 days of gestation- that's right from 4 to 8 weeks of gestation.  Many women may not even be aware of pregnancy at that time.  By the 8 week point, the arm and hand are in an amazingly, fully formed state.  There are fingers, a thumb, and joint with a big- picture normal appearance. 

Times & Star: A family coping with the multiple limb loss of their child after meningitis
A family who lost their daughter to meningitis are helping another youngster who was left disabled by the deadly disease

Tags: limb difference amputee dysmelia rare diseases disability News News News News


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