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EDS (Ehlers-Danlos syndromes) are a group of underlying genetic conditions which can greatly affect the way a person is built due to faulty connective tissues. Connective tissues, or collagen, connect every part of our bodies. When they are faulty, this can lead to an array of problems.  Many lives are impacted without ever knowing or understanding that these are true medical conditions and many may live decades, or even their entire lives without ever receiving answers, validation or treatments. While there are no cures, there are ways to manage the many symptoms that can be challenging to live with. 

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      Recent News & Activities: 
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If you have been diagnosed with a form of dysautonomia, please have a look at the photograph below. If several of the poses are rather familiar to you, you should read up about Ehlers-Danlos syndromes (EDS).
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This is an excellent video summing up what EDS patients experience. While EDS is a group of underlying genetic conditions, the condition in this video (POTS, which is one form of dysautonomia,) is one of the most common conditions found within EDS patients.

* PLEASE SHARE EVERYWHERE.*

There is a severe shortage of cardiologists in our state of Louisiana who recognize it, treat it and understand it completely. As patients learn through awareness, that there are answers to their lifelong health mysteries, they are having to wait to be seen and diagnosed for over a year and some over 3 years. WE HAVE TO CHANGE THIS.

EDS Louisiana, Inc. is stepping out this year of 2023 and making it a priority to bring clear awareness to the medical community.

Anyone who would like to help see this happen, please join us in this outreach!

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  Recent News & Activities: 

MAY is EDS/HSD AWARENESS MONTH!

   Let's PREPARE!

It is our great hope that education & awareness will be spread throughout each & every corner of our state.

We encourage everyone to begin preparing!
There are many ways we can each help. 

(With 900 of us within our Facebook Group,
if we each wear our ribbons & handout even one brochure,
we can really make a difference!)


Awareness ribbons & educational materials are available to anyone who requests them. 
    

Simply click on the link & answer the questions.

If you would like to participate by helping to circulate educational materials, awareness ribbons, our business cards
that include signs & symptoms,
around our state,
or i
f you have other great ideas, please contact us @ edslouisiana@gmail.com.

    If there is a medical professional that you'd like to receive an awareness package, please enclose their contact information in the Request link.

If you are able to donate funds to help with the shipping/delivering of the materials, please do!
Simply press:
        

Let's help to make EDS & HSD become household names!
     

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1 EDS signs.JPEG
If you have been diagnosed with a form of dysautonomia, please have a look at the photograph above. If several of the poses are rather familiar to you, you should read up about Ehlers-Danlos syndromes (EDS).

This is an excellent video summing up what EDS patients experience. While EDS is a group of underlying genetic conditions, the condition in this video (POTS, which is one form of dysautonomia,) is one of the most common conditions found within EDS patients.

* PLEASE SHARE EVERYWHERE.*

There is a severe shortage of cardiologists in our state of Louisiana who recognize it, treat it and understand it completely. As patients learn through awareness, that there are answers to their lifelong health mysteries, they are having to wait to be seen and diagnosed for over a year and some over 3 years. WE HAVE TO CHANGE THIS.

EDS Louisiana, Inc. is stepping out this year of 2023 and making it a priority to bring clear awareness to the medical community.

Anyone who would like to help see this happen, please join us in this outreach!

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Our Mission

The mission of EDS Louisiana, Inc is to provide support and resources to Louisiana patients and medical professionals about Ehlers-Danlos syndromes and related conditions via awareness and education.

Our Vision

Our vision is a better Louisiana where Ehlers-Danlos syndromes and related conditions are fully understood, treated, and supported.

EDS Louisiana, Inc. is a 501(c)(3) nonprofit organization and operates strictly on a Volunteer basis.  

Thank you  to everyone who joyfully sows into our official charity. You will be provided with an official tax deductible receipt when you give. We rely solely upon donations to continue the work we have started.

Since we began in 2019, we've been a witness to seeing hundreds of lives being supported, changed and we believe many lives will continue to be saved as a result of our supportive & educational outreaches. To date, over 300 personalized care packages have been mailed out to those needing encouragement, support & educational information. We have only just begun!

We desire to continue being a light, bringing hope to the many who need to know there is help for the many complex medical issues that have long been overlooked.  We will continue to support medical professionals by providing them with support and educational materials so less & less of our people will have to continue going decades before finally receiving answers and help to their many complex & confusing symptoms.

If you would like to help plan an event to bring awareness to your community, or if you would like to help create a fundraiser, we sincerely thank you. 

We can be reached at:  info@edsla.org.

Spotlight Member of the Month
April  2024

 

Jackie Hyer

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We are delighted to introduce Jackie Hyer, April’s spotlight person of the month. Jackie grew up in Hewlett, New York. She met her husband, Darrin, in an online chat room and moved all the way down to Louisiana to be with him. A few months later, they were married in a beautiful ceremony in New York City. Jackie and Darrin have two adult children, Shaye (23) and Noah (20). They also have two fur babies, Beignet and Teddy, who love to snuggle and share the electric blanket. 

 

Jackie has a Bachelors Degree in Business Management and she worked in the insurance industry before moving to Louisiana. She worked at Metlife until she had her daughter, when she was injured by her spinal epidural during the c-section. She endured nerve damage at L4, L5 & S1, and has been on disability ever since. Jackie’s EDS journey probably started a lot earlier than her spinal injury. She recalls having her first asthma attack at the age of 9 years old and received allergy shots for many years afterwards. She remembers being reactive to many things, even to Ivory soap. Jackie’s mom just couldn’t understand why something as simple as Ivory soap would break Jackie out in hives. The allergist had to dilute serum for Jackie because of her extreme sensitivities. At the age of 17 or 18, she was also diagnosed with Colitis. 

 

Seven years ago, Jackie fell and broke both of her arms. Dr. Savoie, of Tulane, did a revision surgery two years later. After surgery, Jackie was still having issues raising her arm, so Dr. Savoie referred her to Dr.Jacques Courseault. He did not diagnose her with EDS at that time. It wasn’t until she had a failed knee replacement and went back to see Dr. Courseault to see if he could help with her pain and mobility. At that time, he tried Hydrodissection but it didn’t work. He began asking Jackie questions about her stomach, allergies, anxiety, and he tested her range of motion to discover her pinky easily bent backwards. That was the day she was diagnosed with EDS, at the age of 53. When she got home and started researching EDS, it was an “ah ha” moment for her! She realized that it all made everything come together and made sense because it all connected.

 

Dr. Courseault referred Jackie to Dr. Umesh Patel in Covington. She stated, “He’s an angel! I told him my knee replacement was loose and that I needed to have it redone. He told me to get allergy tested for metals. So, I asked Dr. Mehta, my immunologist, to do the testing and sure enough I am allergic to titanium (and Molybdenum). My knee replacement was redone using ceramic coated nickel chromium.”

 

Jackie does not feel as though her EDS diagnosis changed much because she was already going to physicians to treat her symptoms. When she was asked if she had any advice for the group or for new members, Jackie expressed, “It can all be very overwhelming. Just take one step at a time. I have made a great friend in the group, Sherri Weymouth, who very kindly said to me, “There is no magic pill”. Another thing that Jackie claims has really helped her, is when Dr. Patel spoke the words, “Listen to your body”, which she says she really has trouble doing.

 

Jackie has brought so much caring, compassion, and light to our group. I can always count on a call, a text, or an inbox message from her just checking to see how I’m feeling. We have shared time in PT, many lunch dates; (she was just excited to eat with someone that had more food allergies than her 🤣), and fun crafts and projects. We made vanilla extract a few weeks ago! It is so important for us to have other EDS friends, who can see through “Zebra” eyes and speak truth to you. Jackie is that girl!  I’m incredibly thankful and grateful to be able to call her friend!  🦓💜🦋 

 

 

Writer: Sherri Weymouth

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