LearnEDS.org
EDS/ Ehlers-Danlos Syndromes & HSD/ Hypermobility Spectrum Disorder
Providing Support & Resources about Connective Tissues Disorders:
Previous Articles from the past:
May 2023
A Message From our Founder: April Torres
How Thankful we stand here, at the end of EDS AWARENESS MONTH. We, at EDS Louisiana, Inc., are only at the beginning of our many direct outreaches to our physicians, along with all areas of medical professions in our state. We are focusing heavily upon reaching our medical professionals at this time due to the heavy strain that the very few who do understand and are helping, are overly stretched and growing faster and further behind every day. They need plenty of help. We hear this outcry for help and we are searching for more medical professionals who will never have a lack of patients if they will learn about Ehlers-Danlos syndromes along with Hypermobility Spectrum Disorders. Help is needed in every single specialty.
Thank you to my husband, Gilbert Torres, who served as a medic specialist in the army and is currently serving as president of our board of directors. You have poured so much of yourself, your time, and your energy into this cause & purpose without compensation because you understand how vital it is. Instead, you have been the one giving of your own finances to support this cause for me and all of the others who are like me.
THIS CAUSE IS CRITICAL BECAUSE THERE ARE OTHERS OUT THERE WHO ARE JUST LIKE ME, who are fighting alone, without a clue.
We are investing all we can to plant seeds among the many physicians in our state. We need so many more to have knowledge of and a clear understanding of these connective tissue disorders. As our people learn and are filled with awe and hope of soon receiving official validation, they are finding disappointment when they enter our current system of very little help that is severely over-loaded with long, often unbearable wait times in order to be seen, to receive a diagnosis and to be able to begin their journeys of receiving help across the many specialties.
The majority of our physicians and medical professionals are not aware of these conditions, or if they are, they have very little understanding of the gravity and the depths of how they can affect a person so completely. We need for them to be able to easily recognize the signs and symptoms so our children can be diagnosed at an early age to ensure a much brighter and much safer life and future for them. I have personally developed an undying need to continue building support, educating, advocating, and spreading awareness because of what I personally went through. It’s still not complete, but my story will be available in audio form: available without charge as soon as we can possibly complete this project.
Many wonder why I am committed to such an unusual under-recognized group of syndromes. Until something critical happens to us or one of our loved ones, do we become awakened to the seriousness of issues we've not yet encountered. There are so very many things that are truly important to know about the genetic connective tissues disorders that I inherited from my family's genes.
If there is ANYONE in the world within the sound of my voice, who comes across this post, please: Feel absolutely more than free to contact me, and we will be more than happy to mail to you informative brochures and resources to help you understand about EDS, Ehlers-Danlos syndromes and HSD, Hypermobility Spectrum Disorders. If you have any questions at all, we are happy to help.
My family and I were very fortunate in 2017, unlike the family of Meagan Braun ( of "Meagan's HOPE Memorial Walk for EDS Awareness & Suicide Prevention"), put together by Tammy Yakoléstha Swierczynski of Strengthening Connections, Inc. and EDS Wisconsin, Inc.
~ One of the photos (the 3rd photo) included here <was taken at the Neurological Symposium held by Ochsner in New Orleans,> is of me, holding up a large canvas of a photograph that reads, "This One Is For Meagan." Seeing this photograph on Facebook in 2019, was the link that helped me connect the dots regarding how important it is that many others step out as well, and help carry the torch of awareness for the other Meagan's, the other April's, and all the many others who may never even discover that what they suffer with is not 'all in their head', that they "aren't crazy" and that "they certainly are not hypochondriacs."
~ * Her Name Was Meagan Braun. She was a beautiful, intelligent young mom of 2 beautiful children. She battled so many of the same conditions and symptoms that I battle on a daily basis. She chose to end her suffering by ending her life on April 24th, 2017, just 3 months after I attempted/intended to do the same.
* I was rescued; and I’m certain it was for this very reason— to become someone who is able to shed light onto these conditions that very few people even know about.
* Please help us by carrying the torch with us. We have an endless supply of resources that we have prepared to send to anyone who desires to help their physicians, nurses, and loved ones understand.
* If there are any physicians or clinics desiring educational materials for their waiting rooms, please let us know. We will supply them with plenty of them.
* We started here in Louisiana as one small flame. We have learned that one tiny flame can help light many. Our hope and prayer is that our efforts and our achievements of continuing to press on, shedding light onto these genetic, connective tissue disorders, will help save lives and help save families from having to suffer so unbelievably and so needlessly. We need help from everyone to learn and understand about EDS & HSD.
To our physicians: When you are not aware of these conditions, you can sometimes play a role in bringing about further feelings of helplessness and further feelings of hopelessness if you dismiss a patient who is desperately seeking help and to find answers to what's causing their many confusing and complex symptoms. We truly need your help. We are here to support you by providing as many brochures, medical journal articles, etc. that you many need. Please reach out to us. We are here for you.
#myEDSchallenge #myHSDchallenge
#ehlersdanlossociety #mystoryisntoveryet #mystoryisntover #thereishope
May is EDS/HSD Awareness Month!
Spotlight Member of the Month
June 2023
Cindy Huber McCrossen
Spotlight Member of the Month for June is Cindy Huber McCrossen. She resides in Destrehan, where she is the beautiful wife of Dr. John McCrossen and mom of three children that she has poured her life into raising since 2002. They reflect the many attributes she herself carries, by being “ simply great humans with big hearts” who excel in academics, career goals, and extracurricular activities. Cindy herself has a BA in Communications (Broadcast Journalism and Public Relations) from Loyola University, class of 2004.
The answers she replied to me when I interviewed her, were written so beautifully that I felt intimidated trying to summarize them. I just wanted to post what she wrote! Cindy has strong faith that she has clung to, even with all that life has thrown her way between deep personal loss of her only brother and best friend, to surviving major Hurricane Ida damage, and now with the neurological, mental, and physical challenges of Dysautonomia.
She is usually one of the first people I see commenting in the group and on personal posts with a response of prayer for the person who posted. Seeing her faith has encouraged me greatly. She believes “that FAITH is our greatest lifeline because it offers us the gift of hope.” In the process of acceptance of the illnesses and how much it changed her life from being very social to initially choosing isolation to hide her symptoms from those closest to her, she clung to her faith in God, knowing He wouldn’t abandon her. She praises him for leading her to the “right medical team, proper diagnosis and treatment, improving symptoms and confidence, and, most importantly, HOPE.” Her road to diagnosis took around two years but her symptoms began in childhood when she would have strange, unexplainable symptoms pop up at times then would go away. She had lots of neck, shoulder and back issues as a child and as a young teen & was super thin. People thought that the low weight and a heavy backpack were simply the issue. Once spells that made her appear to be drunk for over an hour at a time up to five days a week had appeared, she sought answers at the age of 46.
Her sons’ diagnosis actually led her to EDS Louisiana, where she ended up finding out her own diagnosis. When asked what advice she would give to others, she said, “Utilize this group to your advantage. EDS Louisiana and the relationship that I have formed with some of its members are truly a blessing in my life. All too often, people with our conditions feel like they can’t talk to family and friends about their struggles because they will be judged or dismissed. But, this group is made of people who UNDERSTAND you and all that you are going through. They can empathize. They can also educate you on things that can help you to live your best life. Pay attention to the doctors that are recommended on this site. I personally have experienced that most doctors that aren’t familiar with our conditions will make you feel like your issues aren’t real or valid. So, please do your homework and go the extra mile to go to doctors that people are talking about on this page. Just ask! The members of this group will do their best to help you find one. Also, people will share secrets of what has helped them to feel better. Read about them, talk to your own doctor and maybe try it for yourself. This group can be an amazing resource for you. Don’t hide behind the computer. Get engaged. Ask the questions, share your story as well as your own secrets or struggles. And remember, YOU ARE NOT ALONE.” With Cindy in this group and her strong presence of light, love, and faith, what she said rings true!
Written: J. Traigle
Note from A. Torres: Thank you Cindy for being such a beautiful friend and encourager to so many. You are a joy and a light in the middle of darkness. We thank you for all of the effort you put forth into helping to be an amazing, participating part of our group. The very first day I met you, during one of our Saturday morning socials, I remember telling you, as my eyes watered up, that you have a very powerful story, and you really, really do. To have a husband who is a wonderful, caring person and a physician, not notice your symptoms, or who has seemingly dismissed them, simply because he truly didn't understand is eye-opening. What a powerful testament that is, to share with others how truly "Hiding In Plain Sight" we really are! I related so much, because my precious husband had the same reaction with me at the beginning. To feel dismissed by the one that you know truly loves you is really hard to swallow. And this is one of the vast similarities we all share. I don't believe we've quite yet seen the power of your story come to pass yet. In time, I am quite certain, that yours will be one that travels far and wide, and will be used to help gain the attention of more and more of our state's physicians. It will have a rippling affect in helping hundreds of other patients like us to be validated and understood much sooner. Thank you for simply being you.
~ If you would like to nominate or recommend anyone to be acknowledged in one of our future spotlight person of the months, please send their name to us at edslouisiana@gmail.com.
Spotlight Member of the Month
November 2023
Jonathan "Jon" Rodis
During this beautiful month of giving thanks, we, at EDS Louisiana, feel it is very fitting to celebrate someone that we believe deserves an enormous “Thank You”! While we are dedicated to providing support and resources to those in our state of Louisiana, we have always welcomed others who are in need of support as well. Until now, we have only chosen persons from Louisiana to highlight for those within our community to see they are not alone and to give family, friends and medical professionals a look into our lives . We believe this month warrants a change!
Since the very beginning of our support groups, Jon Rodis, who is 64 years old, has been here, plugging away, and sharing with us his many findings from his endless, ongoing research. He consistently covers many topics that so many of us face. For anyone who’s ever wondered who the man is behind the medical journal articles and the countless update postings, we would like to help show you a look into his life and maybe we might all appreciate him all the more.
Jon is nowhere near the swamps here in Louisiana. He works from his home all the way up and off the coast of New England in Winthrop, Massachusetts. It happens to be right next to Boston! He is married to his wife, Kahleen Kane, who is an attorney who handles disability and family law cases and has done so for over twenty-five years. She’s handled EDS, Marfan, Loeys-Dietz and many other connective tissue conditions cases. For fun, he and his wife enjoy watching a variety of movies, mostly on Netflix. “ I like to watch inspiring movies and funny ones as well. I also enjoy writing creatively in comedy and in sci-fi.” They shared their lives and their home with their beloved dog, CJ, who passed away a few years back. Since his passing, they’ve not quite reached the place to get another dog. “He was very dear to us,” replied Jon.
Jonathan holds a Masters of Business Administration degree. He has been a national disability and medical advocate for multiple conditions over the past twenty-two years, and since becoming permanently disabled in 2001. He is the founder of the “EDS and CTD New England/Massachusetts Support Group” which has grown to over 4,000 members, as well as serves as the President of the “Connective Tissue Coalition” that was established this year, in 2023. (You can check out his profile and plenty of his work on the following 2 sites: www.connectivetissuecoalition.org and the www.ctdnewengland.org ). In addition, Jon has written several articles on disability and life’s challenges we face. He is featured in several books including: Diana Jovin’s wonderful book, Disjointed, as well as important reports and initiatives, such as the NAM’s ‘Selected Heritable Disorders of Connective Tissue and Disability’ that was put together for the Social Security Administration.
Originally, Jon was diagnosed with Marfan syndrome at the age of eight years old, in which he does have, but in later years he's discovered multiple shared-comorbidities with Hypermobility EDS. He says he knew something was different about himself from a very early age. “It was mostly pain” that he noticed. “It was attributed to growing pains, which we all know was only part of what was going on. I definitely was very self-aware that I was indeed different. I realize I was lucky to have a family physician that wanted to find out why I had the issues with my eyes, bones and other abnormalities. The EDS suspicion came from my disability and medical advocacy work. As I was helping others, I noticed I shared many of the comorbidities of EDS.
Jonathan has worked countless hours, countless days, months and years staying committed to supporting many others, finding more research, and helping to build a very large and powerful connective tissue disorder family. “Together we must always make sure that more research is being done - which has the greatest potential to improve knowledge and unlock doors to a better quality of care for us all.”
If you could say anything to our EDS Louisiana family group members, what would it be? Jon replied, “Keep up the great work and care of supporting one another. A support group that is made up of strong advocates can change many things in your state and provide the best local recommendations possible.”
Jon, we sincerely thank you, celebrate you, and want you to know how much we appreciate you and all of the hard work that you do every day on behalf of so many others who are like you. Thank you for your leadership and for continuing to share new information as you find it. We realize how important it is to have the knowledge, the news, the breakthroughs and all of the potentials to help with so many areas of our quality of life.
Connective Tissue Coalition Website: www.connectivetissuecoalition.org
EDS and CTD NE/MA Support Group Website: www.ctdnewengland.org
JR Marfan Syndrome Website: www.jrmarfan58.org
Spotlight Member of the Month
August 2023
Rebecca Blanchard
We, at EDS Louisiana, are happy to introduce our August 2023’s Person of the Month, Rebecca Blanchard. Rebecca is 29 years old and lives in St. Charles Parish, in Luling, Louisiana with her husband, Josh, and their two children. Their daughter’s name is Charleigh and is eight years old. Declan, their son, is ten years old. For fun, their family enjoys swimming, movie nights, and cooking together. Rebecca loves organizing/decorating, reading, playing cards, and spending time with her family.
Rebecca is a certified event planner and previously owned her own business where she enjoyed making all natural bath and body products that were made for sensitive skin. When she finally began understanding what was going on with her health, it became extremely overwhelming and she had to put a lot of her life on the back burner to try and get things figured out with her health. She is now currently disabled.
During Rebecca’s childhood, she had asthma, would get injured easily, and would often have severe stomach problems. “My peers would mention how they could easily see all of my veins.” She first remembers noticing something was really wrong with her health when she was about 15 years old. She had constant headaches, severe menstrual pain, endometriosis, bladder problems, IBS, and had to have two knee surgeries. It was suspected that she may be on the autistic spectrum and she was diagnosed with ADHD. “After getting married, I had seven miscarriages and an ectopic pregnancy. By the age of 25, I had to have a hysterectomy. From there, my body took a further decline. I saw multiple doctors who ran multiple tests. No one found any answers. It was suggested that I go to a psychiatrist. By this time, I was mentally ready to give up on finding out anything else but I was fortunate to be able to change doctors again. This one knew immediately what was wrong with me. I was sent to Tulane and started getting more answers and diagnoses. It took five years previously to find someone to help. And that's only after I knew I desperately needed help. I've been diagnosed with Hypermobile Ehlers-Danlos Syndrome, MCAS, POTS, IBS, HS, ADHD, dysautonomia, arthritis, cluster migraines,and cyclic vomiting syndrome. I am currently recovering from brain surgery due to arteries being wrapped around the nerves in my brain. The surgery damaged part of my nerves and I no longer have control of my balance.”
If she could say anything to the group or to any new members, it would be to: “Advocate for yourself and listen to your body.” She encourages others to “never quit fighting for yourself when you know something is wrong. There may be ten doctors who don't believe you or know how to help you, but all it takes is that one doctor to help you get the answers that you need. When you feel like no one knows what you're going through, there is a whole community in this group ready to support you and to help you back up when you're too tired to do it on your own.”
“This group has given me a place to feel connected when I feel alone and unheard. There is always someone here to help me, even if it’s just having a place to vent. I've also received plenty of useful educational materials in the mail for myself and plenty more to give to my family and friends who don't understand what it is I’m going through. It's been my safe space to be okay with being disabled or with being in pain. I am very thankful for having new friends that I can talk to who really do understand.”
Rebecca, from the morning you appeared on that Saturday morning coffee social, we knew you were one of us! We are super proud of you for pressing on and living life to the fullest for your beautiful family. We are honored to have you in our EDS Louisiana Family!
Spotlight Member of the Month
July 2023
Ivy R. Ducote
We are so pleased to introduce Ivy Ducote, EDS Louisiana’s July 2023rd’s, spotlight person of the month! Ivy is a very courageous and brave 16 year old who has learned so much in her young lifetime already. She lives in Pineville, Louisiana with her parents, Jessica and Frank Ducote, and is an only child. Ivy’s boyfriend of over 3 years, Trenton Strong, is one of her biggest supporters. This fall, she will be a junior, starting her 11th grade year. Ivy plans to attend cosmetology and aesthetician school after she graduates from high school. She currently cleans houses and puppy sits! Their home is filled with plenty of pets. She has 5 dogs: Maggie, Max, TT, Daisy, and Lil Boi. Milo and Mikey are her 2 cats. She also has 2 guinea pigs named Bean and Boo, and last but not least, she has a gecko named Yoshi! She has enjoyed being in Dance for about 13 years as well as being in Theatre. For fun, Ivy enjoys movie nights and eating out.
We first learned about Ivy when her mother, Jessica, reached out to us to let us know that her daughter felt a strong desire to create an awareness event at her church for her community to learn about dysautonomia and EDS. She said she was hoping that we could help provide educational or awareness materials that could help Ivy share about Ehlers-Danlos syndromes during the event. Jessica shared with us that Ivy had felt very alone for a long time, and now that she has found answers and help, she wants to reach out to others who may feel that same isolation that she once felt. Assuring Jessica that we would help Ivy to be fully prepared, we desired to learn more about this courageous young lady. Ivy has remained an honor roll student throughout her high school career. Her love and commitment to dance has paid off with scoring first place in three dance competitions including a solo. Ivy shared with us, “After being diagnosed with the trifecta of EDS, POTS and Mast Cell Activation Syndrome, I had to quit dancing and have been having to attend Physical Therapy in its place.” However, Ivy’s love for the sport has ushered her into pressing on and she has enrolled into three dance classes for the fall.
When she was between the ages of 3 and 4 years old, Ivy started having severe leg pain as well as joint pain that was dismissed as growing pains. Several years later, she began having plenty of stomach pain and GI issues. As she continued to grow, she would have weak spells along with nausea and would appear very pale. When she was between 8 and 9 years old, she began noticing how different her flexibility was from the other girls in her dance classes. By the age of 12, she noticed she was having muscle strains and becoming more accident-prone. When she was 14, she began passing out and at times, convulsions would follow. Not long after, Ivy was diagnosed with a form of dysautonomia, Postural Orthostatic Tachycardia Syndrome. “At age 15, I was diagnosed with hEDS, MCAS, and the MTHFR gene mutation (heterozygous form).” Ivy had been blessed to learn of these because they run in her family. Her older twin cousins had also been diagnosed with Hypermobile Ehlers-Danlos Syndrome as well as related conditions.
When asked if there was anything else she’d like to share, she stated, “I have learned that God gives his toughest battles to His strongest fighters, and I’ve learned that all bad days come to an end, and we have to look ahead for the good days. I am a 16 year old advocate for chronic/invisible illnesses. I recently headed my very first awareness event in my community where we spoke about dysautonomia, EDS, and MCAS.” Ivy looks forward to continuing these efforts!
Courageous Ivy, you were born for greatness and we are so very excited and proud of you! For taking on this meaningful initiative at your home church, we, at EDS Louisiana, Inc. found it fitting to gift you with this, “Advocacy & Leadership Award.”
Advocacy & Leadership Award
EDS Louisiana, Inc., 501(c)(3), recognizes:
Ivy Ducote
At the age of 16, Ivy is a blessing, desiring to serve her community in Pineville, Louisiana. After spending years feeling alone, she now wants to help others to find answers so they won’t have to feel the isolation that she felt. She is choosing to step out in public advocacy to help bring awareness about her under-recognized and under-diagnosed conditions,
~ Dysautonomia and EDS, Ehlers-Danlos syndromes ~
at His Church, 1381 Pinehurst Drive, LA 71360
on Saturday, June 24th, 2023.
This outreach will help improve the lives of many and ultimately save lives. We are honored that you asked us to stand behind you and help supply you with educational materials as you plant seeds of knowledge that will last a lifetime.
We, too, truly understand how it feels to be alone fighting without help.
APRIL D. TORRES, RN
FOUNDER OF EDS LOUISIANA, INC.
GILBERT TORRES, JR.
PRESIDENT OF EDS LOUISIANA, INC.
Spotlight Member of
April 2024
Jackie Hyer
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
