Archive for the ‘Parenting’ Category

Watch this Video on Pain Management for Ehlers-Danlos Syndrome (EDS)

Posted on August 24, 2013

Watch this MUST-SEE video presentation from the Cincinnati Children’s Hospital discussing chronic pain management for Ehlers-Danlos Syndrome. This recent “online Q & A” event was held Tuesday, 8/20/13. Their primary focus is pediatrics, but the information will be helpful to all patients. Click here to start the video program About This Session Cincinnati Children’s Hospital Medical Center […]

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Book Purchases Will Help EDSer Get Mobility Van

Posted on August 20, 2013

You can help EDSer Erika by purchasing the novel entitled “Pearl, MD”. Proceeds will help Erika and her family purchase a van to transport her in her wheelchair! “For the next 60 days, all author proceeds from the sale of Pearl, MD will be donated to the family of Erika Heitman, a 14-year-old girl from Carolina […]

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There is a Lack of Best-care Practices in Canada for Ehlers Danlos Syndrome

Posted on August 17, 2013

The Improve the Life of Children (ILC) program in Canada is making progress promoting support and awareness  for children with chronic pain like Ehlers-Danlos Syndrome.. Oakville Beaver ByJohn Bkila “Diagnosed with Ehlers-Danlos Syndrome in 2009, Oakville’s Brooklyn Mills became the inspiration behind the ILC Foundation — nearly three years later, the organization has made it its […]

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EDS Teen Discovers Physical and Emotional Benefits of Therapeutic Riding

Posted on August 11, 2013

Riding gives Karley the chance to get away from everything that is happening in her life. Building an emotional connection with the horse helps her to focus on riding instead of her pain.  By ALLISON HERR, 17 freestyle@lnpnews.com TEEN FEATURE “Sixteen-year-old Karley Hill exudes optimism and is able to share that optimism easily with others. […]

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EDSer Wants In Vitro Fertilization; Raises Ethics Debate on BBC Radio

Posted on August 9, 2013

Listen to this radio show discussing the pros & cons of In Vitro Fertilization (IVF) for EDSers. (Click on the title above to listen.) Rosemary has EDS & wants assisted conception. Rosemary herself is willing to take the risks, whatever the potential consequences.  Click on this link to listen to the Radio Show Interview on “Inside […]

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9-Year-Old EDSer “Fights Like a Girl”

Posted on July 29, 2013

  MADDISON Parker, 9, lives by the saying “suck it up, princess”. She has to say it several times a day as she battles with Ehlers-Danlos Syndrome! Dear World, My name is Maddison Parker, I am 9 years old, and I have Ehlers-Danlos Syndrome. I want the world to understand Ehlers-Danlos Syndrome, so am sending […]

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4-Year-Old EDSer is an Inspiration to Her Family

Posted on July 29, 2013

It is amazing how resilient young children can be despite their struggles with Ehlers-Danlos Syndrome. Kaylee Kretschmer looks like a typical 4-year-old budding ballerina, but she’s a true fighter. “She was born with Ehlers-Danlos-Syndrome, a little known rare genetic condition which means her limbs dislocate easily, she is prone to bruising and is constantly tired. Her […]

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9-Year-Old Girl Raises Awareness for Ehlers-Danlos Syndrome

Posted on July 25, 2013

Watch this video interview of Maddison Parker, a 9-year-old Australian who is passionate about EDS awareness.  Her family members are helping each other manage their lives with Ehlers-Danlos Syndrome. We appreciate your Likes and Comments

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