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EHLERS DANLOS SYNDROME (EDS) often goes undiagnosed...untreated

For Louisa family, illness has been a mystery for years

Madison, Emma, MacKenzie, and Devin Nelson. Only Devin does not have Ehlers-Danlos Syndrome.Madison, Emma, MacKenzie, and Devin Nelson. Only Devin does not have Ehlers-Danlos Syndrome.

By Dorothy Nelson

When my oldest was first diagnosed with hEDS we had been to five doctors that had no clue what was wrong with her. Her legs were turning blue and the best they could tell me was they suspected lupus was the cause.

April 14, 2014 changed our lives forever as we met with a rheumatologist at Cincinnati Children's Hospital who said she had Ehlers Danlos Syndrome.

Ehlers Danlos Syndrome (EDS) is a connective tissue disorder that can affect someone from head to toe. The common saying is “if you can't connect the issues think connective tissues.” There are several types of EDS  but the most common among them is Hypermobility EDS (hEDS.) This also happens to be the only one that is diagnosed entirely based on clinical presentation.  There is no mutation that has been found yet. 

In March of 2017 new criteria for diagnosing hEDS was released by a panel of knowledgeable doctors. The new diagnostic criteria of Hypermobile Spectrum Disorder (HSD) includes three criteria that must be met for a diagnosis of hEDS. Previously, it was diagnosed primarily by looking at the flexibility of certain joints using the Beighton Scale. 

ON April 14, 2014 we met with a rheumatologist at Cincinnati Children's Hospital who said she had Ehlers Danlos Syndrome. As we started physical and occupational therapy we discovered just how much we thought was normal wasn't.

You see, my whole family is flexible and so the struggles she had I had chalked up to "normal". She didn't have the core muscle strength to ride a bike, the strength in her hands to open bottles or button buttons. Her anxiety, ADD, OCD, complex tics, bladder issues, gastroparesis, MTHFR mutation, dislocations, chronic fatigue, chronic pain, low vitamin D and iron, venous insufficiency, and poor proprioception were all to blame on hEDS. We are also now looking into autonomic dysfunction.

Thankfully, we have been blessed to meet many other EDS families.  They each suffer in their own way.  EDS is a lack of collagen and you have less collagen, as you get older. One EDS patient, also known as “zebras”  can have collagen deficiency in one area that is completely different in another person

Currently three zebras in our EDS group from Louisa are getting ready for surgery caused by damage caused by lack of collagen. Two of which have to travel over two hours to go to doctors that are just vaguely familiar with EDS.

We want to change that. With the new criteria recently published by The Ehlers Danlos Society we hope that more doctors will read up on it and the misconceptions about hEDS can stop in their tracks. 

Here are a few interesting facts about EDS: 

1. Ehlers Danlos is not rare, it is a rare diagnosis. 

2. Yes you can go your whole life and only have arthritis like pain and no further complications. 

3. There is no cure but the earlier diagnosed the better quality of life you can possibly provide for yourself/kids. 

4. EDS doesn't discriminate.  You can be any age, race, gender, size and shape. 

5. The most common misdiagnosis for EDS is fibromyalgia. 

6. There is no one size fits all treatment for EDS patients. The saying among the EDS community is that no two zebras have the same stripes. 

Imagine spending your entire life in pain. Now imagine for a brief second finding out that wasn't normal. Then stretch a little further and imagine that doctors that you trust with your life have little to no knowledge and depend on you to do your research and tell them what is wrong.

As a parent this has been a wake up call that doctors don't know everything (yes I truly believed they did before this.) My husband Kevin and I want doctors to acknowledge that EDS is not rare and to do research. I don't want to have to travel four hours one way for my 3 kids to get to doctors that understand EDS. Our plea is for someone to care enough to listen, research, and help. 

For more information you can go to: https://www.inspire.com/groups/ehlers-danlos-syndromes-and-related-disorders/ Feel free to contact me thru the Lawrence County Ehlers Danlos page as well.

 

Our 39th spotlight in the FACES OF HOPE: WE DO RECOVER series will focus on Matt Hutchinson’s story, “I Am Not Anonymous.”

My name is Matt Hutchison and I Am Not Anonymous. My story is no different than others that have been trapped in addiction, pain, hurts, brokenness, fears and failures.  My first alcohol and drug use started when I was 14 years old.  Why did it start then:  disconnection from family, wanted to connect with friends and others, curiosity and searching for something to make me feel valuable and complete. I used drugs and alcohol throughout my Jr. high, high school and college years. During that time I experimented with anything, searching for connection, peace and value (relationships, sports, music, occult, friends, bars, travel, isolation, etc.)... nothing satisfied! I was raised in a good home with loving parents that taught me right from wrong but I had to find out for myself. Always the hard way! At the age of 21 or 22 I decided it was time to grow up and quit using drugs and alcohol. The grown up thing to do was to get a real job, get married, buy a home, have kids, attend church, get involved in community, etc.  So for years I did all of those things while carrying all of this baggage from my past and trying to maintain my life. I was the guy at the circus spinning all the pie plates. I couldn’t say no. Stress, pain and depression was setting in on my life after years of striving and carrying all the baggage. I talked to my doctor about the stress and pain.  He prescribed Xanax for stress and Lortab for pain.  It had been years since I had used any drugs legal or illegal and what I was doing was ok because my doctor ordered it.  What I didn't realize was the prescriptions were just masking the stress and pain in my life. This led me to the darkest place I have ever been in my life. I would do anything and everything to try and maintain my life and addiction. In this darkness I found Hope and how to find freedom from my pain and stress. This was through the help of many family members, friends, mentors, sponsors, counselors, pastors, 12 steps, Celebrate Recovery, AA, and NA.  Addiction Recovery Care thank you for giving me the tools and educating me to this new way of life and the holistic treatment you provide.  

DESCRIBE YOUR AHA MOMENTS

1. When I was arrested I felt a sigh of relief.  I knew the madness was going to stop. 

2. After sitting in jail and at Belle Grove Springs Recovery Center for about 60 days I decided I wanted to live and not die.                                               

3. When I was able to connect the dots of the pain in my life through the help of Addiction Recovery Care and discovery of God's love and Hope for me.

4.  I was at Belle Grove Springs and was hearing everyone talk about how they were hearing from God.  One afternoon I was walking around the lake area, I was mad at God because He wasn't talking to me. I think I probably cussed at him. God?  Why aren't you talking to me? I heard in a clear voice “you’re not listening!  Learn to be still and know I am God.”

                                                                                                                            DESCRIBE THE FEELINGS AND EMOTIONS WHILE IN ACTIVE ADDICTION

The feelings and emotions I felt were hopeless, broken, lonely, shame, sadness, fear, bitter, anger, and hurt.  My feeling and emotions were all intermingle which lead to my addiction.

WHAT IS THE DRIVING FORCE THAT KEEPS YOU GOING WHEN TIMES GET TOUGH?

Faith, Hope, Love, Grace, Family and Friends.  Knowing that any pain I encounter today that God will carry me through when I can't carry myself.  Carrying the message of hope to those suffering.  

WHAT OBSTACLES OR ROADBLOCKS HAVE YOU ENCOUNTERED ALONG YOUR RECOVERY JOURNEY?

The obstacles and roadblocks have been many!  Legal, Financial Loss, Bankruptcy, Divorce or Separation, Job Loss, Depression, Anger, Fear and Health Issues, Friendships.  

WHAT IS SOMETHING YOU WANT PEOPLE WHO HAVE NEVER STRUGGLED WITH ADDICTION TO KNOW?

What I want others that have never struggled with addiction to know is people in addiction they are not their disease!  The things we did in our addiction is not who we are.  There are root causes of addiction and it is very painful to find healing, closure, forgiveness of yourself and others.  

WHAT ADVICE DO YOU HAVE FOR FAMILY MEMBERS OF A PERSON IN ACTIVE ADDICTION?

Dig in and hold on.  Don't give up on them.  Love them, but don't enable them.  Educate yourself about addiction, read books, YouTube videos, get involved in support groups, Al-anon, Celebrate Recovery, etc.  Help get them into treatment.  

CLOSING THOUGHT

Finding recovery from addiction is one of the hardest things I have ever encountered in my life.  If I could give the gift of recovery to every addict, I wouldn't do it.  I don't want to ruin their journey!  It has been an amazing journey!  Rediscovering myself understanding I have real value and worth.  Discovering God is always right beside me and loves me no matter how bad things get.  He restores and my Hope is anchored in Him!   Gods goodness always prevails!

If you or a loved one is struggling with addiction, please call Addiction Recovery Care at 606.638.0938 or visit them on the web at www.arccenters.com

 

There is hope. There is help.

William G. Duke Golf Scramble raises more than $28,000 for Big Sandy College Educational Foundation

NEIL TURNER WINS 2017 CADILLAC XT5 BY HITTING HOLE IN ONE

Neil Turner, of Turner Technology, Inc., stands beside a 2017 Cadillac XT5 he won by hitting a hole in one at the William G. Duke Golf Scramble on Wednesday, May 17 at StoneCrest Golf Course.  The hole in one was sponsored by Walters Auto Group.Neil Turner, of Turner Technology, Inc., stands beside a 2017 Cadillac XT5 he won by hitting a hole in one at the William G. Duke Golf Scramble on Wednesday, May 17 at StoneCrest Golf Course. The hole in one was sponsored by Walters Auto Group.

PRESTONSBURG, Ky. – Big Sandy Community and Technical College raised $28,323 for the Big Sandy College Educational Foundation, Inc. during the annual William G. Duke Golf Scramble on Wednesday, May 17 at StoneCrest Golf Course.

This year’s scramble was sponsored by Kentucky Power, Booth Energy, Berkeley Energy, Hutch Auto Group, ICC Global Hosting, Fairway Outdoor Advertising and the Kentucky Coal Academy. Tudor’s Biscuit World and Texas Roadhouse were the breakfast and lunch sponsors, and Appalachian Wireless was the awards sponsor.

The highlight of the event happened early when Neil Turner, with Tuner Technology, Inc., hit a hole in one on the Par 3, hole 8 to win a 2017 Cadillac XT5 from the Walters Auto Group.

“I couldn’t believe it,” said Turner. “You dream of hitting a hole in one, but to hit one like this is amazing.”

Seventeen teams played in the golf scramble, which is played annually in memory of William G. Duke. Duke served as the special projects coordinator at the college from 2004 until his death in 2012.

 

Berkeley Energy won first place. Team members were Sen. Johnny Ray Turner, David Bradley, Glenn Turner and John Harris. Hutch Auto Group finished second. Team members were: Ronald Patrick, Anthony Ottrando, Michael Fannin and Will Branham. Texas Roadhouse was third with team members Daniel Dunn, Jessen Newbanks, Justin Taylor and Noah Lumiis.

Winner of the longest drive was Chase Carpenter of ICC Global Hosting.

“This was a great day of golf for an even better cause,” said Dr. Alan Scheibmeir, interim president of Big Sandy Community and Technical College. “We want to thank all of those who made this event a success.”

For more information on the Big Sandy College Educational Foundation, Inc. or giving opportunities at BSCTC, contact Kelli Ayers at (606) 886-7358 or email This email address is being protected from spambots. You need JavaScript enabled to view it..