Archive for the ‘Parenting’ Category

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Ehlers-Danlos Mom Makes Tough Decision For Third Child

Posted on July 7, 2014

Veronica Foale says Ehlers-Danlos Syndrome has not stopped her from having a good quality-of-life.   By Fred Hooper. When Veronica Foale was diagnosed with a genetic disorder she was also told there was a 50 per cent chance she would pass this condition on to her children. She already had two children when she found […]

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari.   “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]

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Australian “Jelly-Jointed Sisters” Fight Ehlers Danlos Syndrome Together

Posted on June 26, 2014

We are very excited about the addition of our first Australian Group to our Ehlers Danlos Syndrome Support Group Family! By DANIEL BATEMAN.   Elyshia and Emily Hickey may appear to be typical, healthy teenage girls. On the inside, however, they are battling a rare genetic disease that has given them the joints of elderly women. The Cairns […]

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8-year-old with Ehlers-Danlos named Honorary Ranger at Yosemite National Park

Posted on June 12, 2014

This was a dream-come-true for Gabriel, a Florida 8-year-old with Ehlers-Danlos Syndrome. “A boy with a debilitating disorder had his dream come true when he was officially named an honorary ranger at Yosemite National Park. Eight-year-old Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and […]

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Six-year-old Lillie-Grace Fights Daily Battle with Ehlers-Danlos Syndrome

Posted on June 4, 2014

This six-year-old girl may have challenges, but she attends school and has many friends. She loves dancing, singing, and swimming.  “An inspirational six-year-old girl with a rare condition has told of her daily battle with the syndrome. Lillie-Grace Tomlinson was born with Ehlers-Danlos syndrome (EDS) but was only diagnosed last year. The condition is caused by […]

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Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

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Annabelle is a Spirited Young Girl With Vascular EDS

Posted on May 10, 2014

Annabelle’s story has raised much publicity for VEDS! This brave young girl is now attending and enjoying school in spite of her struggles with VEDS.  By Tui Benjamin. “SHE has become something of a Bury celebrity — the spirited young girl Annabelle with the wide smile for whom a bump in the playground could be fatal. […]

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“Doctor Speaker Series”: Cardiac manifestations in EDS – RECORDING AVAILABLE

Posted on May 8, 2014

  On May 7th, Dr. Staci Kallish spoke about cardiac manifestations in EDS. EDS Awareness’ Doctor Speaker Series is a webinar program hosted by EDSawareness.com and sponsored by www.bodysupportstore.com  Upcoming FREE sessions will be offered the 1st and 3rd Wednesdays of each month.  Hope you can join us!  CLICK HERE for the recording More about Dr. Staci Kallish Click […]

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