Monthly Archives: August 2018

SPC Featured on Women.com

Special Parents Confidential Featured on Women.com

We’re pleased to announce that Special Parents Confidential has been featured on Women.com.  Chosen by editor Ashley Locke, we’re included in her article in the Health Section.

Women.com is a site dedicated to supporting women through all walks of life. They receive more than 15 million unique monthly visitors.  Founded by Susan Johnson, formerly of Facebook, Photobucket, and Expedia. From their “About Us” page:

“Our hearts and minds are won over by places that know how to make us feel good.  A boutique that always carries your favorite soft tees.  A coffee shop whose baristas always remember how you like your lattes.  A television show with characters that always make you laugh out loud. We aim to support and promote women who are creating wonderful and beautiful things.  We hope to offer a trusted destination that will give you a moment’s rest and a bit of laughter in our constantly on-the-go, work-driven world.  Our dream is that every time you want to smile and add a little bit of delight to your day, you come to women.com.  And when that smile carries over into the rest of your life and world, you share how good you feel with everyone around you.  Pass it on”.

Resource Recognition.

Our podcast was chosen as one of the five best resources for parents of kids with Autism. Although, as you know and as they point out, Special Parents Confidential has resources for all parents of special needs kids. 

Thanks to Women.com for the feature, and thank you to all of our listeners for helping to spread the word about us! Special Parents Confidential will continue to provide the best information possible to help all parents of special needs kids.

Special Parents Confidential 61 Ehlers-Danlos Syndrome

Ehlers-Danlos Syndromes.

“The Ehlers-Danlos Syndromes, or EDS is a group of connective tissue disorders characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.” 

The above is from the ‘What is EDS’ webpage of the Ehlers-Danlos Society. EDS is a genetic disorder that, for those who have it, can cause a lifetime of chronic pain and problems. Imagine your joints are so loose and flexible that they become dislocated constantly with little effort. Your skin is far too flexible and easy to bruise. Then imagine the constant, unending pain that accompanies both problems. EDS can also affect other parts of the body including the stomach and intestines, and even how your brain functions.

Invisible Special Needs.

Kids who have Ehlers-Danlos Syndrome are often not recognized as having special needs. Some may need to be in wheelchairs, but then may not need a wheelchair. EDS can cause fatigue, and combined with the chronic pain, can make it difficult for the child to participate in gym class, sports programs, or even having fun on the playground. However, many kids with Ehlers-Danlos Syndrome can appear to be otherwise completely normal.

One Family’s EDS Story.

For this episode we’re talking to Elizabeth Lovett. Her 13 year old daughter, Maddie, has one of the variants of Ehlers-Danlos Syndrome. Elizabeth shares the difficulties that she and her husband faced in trying to figure out what was wrong with her daughter, and finally getting the diagnosis. She talks about the continuing medical treatments and physical therapies Maddie receives to help her. We also find out about the challenges EDS causes for her in school. 

To regular people, children with EDS often appear normal, but they will complain that their legs and arms hurt and that they can’t walk or run. The parents often wind up having to carry the child or find other ways of getting around like a stroller or a wagon. That can look strange, especially if the child is older than a toddler.  There can be a tendency to assume that the child is spoiled or that the parents are too accommodating. However, Elizabeth reminds us that there is far more going on than meets the eye. Just because you can’t see it, that doesn’t mean nothing is wrong.

We also get a chance to talk to Maddie herself about her life and how Ehlers-Danlos Syndrome affects her directly. 

Links Mentioned In The Podcast

The Ehlers-Danlos Society – Excellent website for information and support.

Special Like Me… Madison the Great. The book written about Maddie and her life with EDS.

Connect With Us On Facebook!

A great way for you to stay in touch with me and communicate your thoughts on these episodes is on the facebook page for Special Parents Confidential. Use the Facebook button on the right side of this website, or the button at the bottom of this text, or use this link. You can also search Special Parents Confidential on Facebook. It’s also a great way to share our podcast with everyone you know.

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