LearnEDS.org
EDS/ Ehlers-Danlos Syndromes & HSD/ Hypermobility Spectrum Disorder
Providing Support & Resources about Connective Tissues Disorders:
Our Leaders
April D. Torres, RN
Founder
April is a Registered Nurse who graduated in Nursing from Our Lady of the Lake College in 2001. She was a hospice nurse but now volunteers her time supporting persons affected by EDS, Dysautonomia, Mast Cell Activation Syndrome (MCAS), and other related disorders. She wants to do everything she can to help others feel supported. She is committed to helping ensure a better Louisiana where EDS and related conditions are better understood, treated, and supported.
"From an early age I knew something was wrong with my physical health. I often felt faint, passed out easily, felt nauseated, dehydrated, and felt very sick after eating most of the time. Because I looked normal and healthy, I was treated as if it was all 'in my head'. At the age of 45, I finally discovered Hypermobile Ehlers-Danlos Syndrome, Dysautonomia, and Mast Cell Activation Syndrome and received these linked diagnoses that validated all of my concerns. I had to travel to Houston, TX to be diagnosed."
April is very concerned for the many others like her, who have these illnesses and may never know or understand what's wrong with them. She wants them to know they are not crazy, they aren't alone and that these are very real illnesses. She wants to offer support, education and understanding.
April is a wife and a mother of six children; three grown and three young. She is a Gran to one special granddog. She shares her home with three beautiful rescue cats, "Fluffy", "Mercy", and "Tigger". April is a nurse, a writer, an artist, and has a deep appreciation for music. Her heart is filled with desire to bring HOPE to those who are suffering. She has just published her first book, God Is Hilarious: My Rescue Story, where she shares about the many obstacles that she faced on her road leading to her diagnoses, and she explains why she is so passionate about helping others.
Mona S. Herbert, M. Ed.
Executive Director
.
Mona is a pillar in her community. She is a school teacher with an undergraduate degree in psychology and elementary education (K-8th grade). She has a Masters Degree in Education, with a gifted certification in administration/supervision of Early Childhood/Special Education. During her 40 year career, she has taught from the ages of birth through 21 years of age in varied settings of public, private and parochial schools as well as a children’s hospital, adolescent psychiatric facility and homebound.
She is the mother of a 35 year old son and a 23 year old son. She has been an advocate for her sons in both public and private schools. Mona was diagnosed with Hypermobile EDS at around the age of 35 after years of searching for answers. She also has additional rarely-heard-of-conditions that have long required her to be her own best advocate. Her personal experience as a patient and a mom, along with her professional career, provide her with a perspective that can aid her in assisting with our School Outreach program. In recent months, however, Mona has willingly accepted the tasks and role of serving in the capacity as our Executive Director, and has been appointed to represent EDS Louisiana, Inc., and to lead our team, as our founder takes a step back to focus on her health.
Mona embraces what Marvin J. Ashton expressed, “If we could look into each other’s hearts and understand the unique challenges each of us face, I think we would treat each other much more gently, with more love, patience, tolerance, and care.” She is very hopeful that, through our school outreach program, we will be able to explain the unique challenges of EDS, and make a difference in the lives of many. She believes, “Together we are stronger and can work toward a brighter tomorrow.”
Sammy Jo Price
Mire, Louisiana
Executive Assistant
Sammy Jo was born and raised in South Louisiana. She graduated with a degree in Applied Sciences, as a Clinical Laboratory Scientist. She was also an active member within the bodybuilding and fitness communities before her symptoms progressed to a point that made her unable to continue to actively participate.
Sammy Jo was diagnosed with Dysautonomia shortly after suffering a stroke in 2018, after spending years dealing with unexplained symptoms. Since then, she has been diagnosed with Postural Orthostatic Tachycardia Syndrome(POTS) with underlying bradycardic disease, Hypermobility Spectrum Disorder (HSD), and Mast Cell Activation Syndrome (MCAS).
She now spends most of her time at home with her two sons, her Shih Tzu "Asher", and her husband Kenneth, with which she's shared over 20 years and counting. Sammy Jo is passionate about raising awareness in the medical community about EDS/HSD and the co-morbidities that sometimes exist alongside. She is also active in support groups, to not only bring awareness and share her own personal experiences, but to give hope and offer a shoulder to those who need it.
Stephanie Dixon Lambert,
Covington, Louisiana
Meet & Greet Support Group Leader
Stephanie loves being active in her community and helping comes naturally to her. She was finally diagnosed with EDS at almost thirty years of age as well as hyperandernergic POTS, immune deficiency, and other hEDS issues over the years after feeling defeated with the lack understanding by her local medical professionals. She learned how to be her own advocate and not take "no" or "I don't know" for an answer by having to fiercely advocate for her and her husbands' own two beautiful little zebras. This aspect allows her to easily relate to others dealing with the same struggles. Being a Mama Zebra has made her very passionate about awareness so that other little Zebras, including her own, can get the help that they deserve and won't have to deal with the unnecessary problems that she had to for three decades on her own. Stephanie serves as our Covington Support Group leader and is looking forward to helping us start our Tween Support Group.
Justin Lowe,
Longville,Louisiana
Men's Support Leader
Justin grew up, the majority of his life, in Lake Charles, Louisiana. He graduated with a degree in Culinary Arts but later switched paths and became an NCCER certified carpenter in the industrial field. A few years later, he branched off and started his own construction business. Since then, he has been battling many symptoms that have progressively gotten worse and has forced him to quit everything and stay home. He has spent the last 3-4 years seeing numerous doctors and having countless tests and scans done. Many doctors had given up and were clueless as to what could be going on. Many even told him to see a therapist and insinuated that he was just crazy and that it was all in his head.
“It hit me like a freight train and turned my life upside-down. First, it was my legs, then my wrist, then my hips and my neck. I was left with a battered body that was in constant pain and no one believed me. I had aches everywhere and weird symptoms that were sporadic and quite alarming, to say the least. It felt as though someone had cut my puppet strings and my body was just spiraling out of control.” He continued to fight to find answers as to why his body was shutting down at the age of 29.
Justin is a loving husband to his wife, Niki, and is an incredible father to his two little boys, Cash and Colton. He and his little family have kept high spirits through this entire journey and have not stopped fighting, no matter what it's taken. His little boys look up to their daddy as their own personal superhero and have been Justin’s drive and motivation to find answers so he can hopefully play and wrestle with his little boys again one day.
Justin swore through his entire fight, that when he finally found out what was going on, he would become the biggest advocate for people like him. He does not want anyone to ever have to go through what he went through. On May 20th, 2021, Justin finally received answers, a diagnosis, and reassurance that he is not crazy. He is very excited for this incredible opportunity to spread awareness and meet other zebras out there who are like him.
.jpg)
Angelle W. Painter, M.Ed.
Vice President
Angelle is a dedicated elementary school teacher, earning a Masters Degree in Elementary Education with a 4.0 GPA. Angelle was born and raised in the New Orleans area, and lives with her husband Eddie, and daughters Eliza and Tayla in Jean Lafitte.
All her life others questioned why she was so different, from cracking joints to always having trouble with energy. She would get the typical “she is just lazy” look. She always felt like an outcast for not having the ability to catch up to her peers. It wasn’t until her daughter was diagnosed that she found out the real reason behind all the aches and pains she endured her whole life.
Angelle and Eliza were visiting the geneticist at Children’s Hospital in 2011. The doctor had suspected Eliza suffered with EDS, and was examining her to test her whether her extra flexibility fit the parameters for a diagnosis. After Eliza was able to perform all 9 of the physical tests that define EDS, Angelle said, “Wait, I think I can do all of those things too!” Sure enough, both Eliza and Angelle were diagnosed with Hypermobile EDS on the same day. Eventually, Tayla was also diagnosed as well.
It was then that Angelle was finally able to explain the “unrelated” symptoms that had plagued her for 32 years: cracking joints, “double-jointedness”, fatigue, lack of energy, constant aches and pains. After sharing the diagnosis of herself and Eliza with other medical professionals, it became immediately obvious that awareness and knowledge of this condition was distressingly low. Angelle created a Facebook group for those in Louisiana to share their stories and information about all forms of EDS. The Louisiana EDS Zebras group now boasts close to 700 members.
Angelle is also very active in several church ministries, and places God and His will foremost in her life. Spending time with her family is her favorite way to pass the time. She lives to inspire others to reach goals they didn’t know they could do! Her current passion is revamping her page Still Pushing Through - The Life Of Angelle Painter for daily inspirations, recipes, and anything else that brings positivity!
Mary Ann Joffray
Volunteer Coordinator
Mary Ann is a lovely addition to our team. She worked as the Assistant Director of Volunteer Services at Children's Hospital in New Orleans for 25 years where she was responsible for interviewing potential volunteers, managing the database, and coordinating volunteer schedules/placement. Her department recruited and managed large groups of volunteers for special events/fundraisers. She retired in 2014 to care for her ailing in-laws.
Mary Ann is a wife, a mom of three amazing kids (one who has hEDS), and two rambunctious rescue labs. Her hobbies include gardening, fishing, cooking and crocheting.
Stacey M. Vizinat
Ville Platte, Louisiana
Executive Assistant
Stacey is 44 years old and is married to her husband, Kirk. She says he is a very patient and endearing man who makes her laugh just about every day! They have two intelligent and well-mannered teenage boys, Evan & Adam. Evan is 17 years old and enjoys powerlifting and is fascinated by science! Adam is 14 and is a computer tech/gamer who aspires to become a programmer! They live in Ville Platte with their Australian Shepherd named Indy.
Stacey has worked full time for Schlumberger for the past 15 years, and has held positions in Quotes, Inside Sales and Shipping. When she’s not working, Stacey enjoys camping, gardening, baking and doing crafts.
Stacey is very eager to help bring awareness of EDS & HSD to Louisiana because of her own personal frustration with receiving inadequate healthcare for this disorder.
“Healthcare providers must become educated on these disorders so that correct diagnosis, preventative care and therapies can be provided to people like us.”
“Looking back, I now see that I've had symptoms since childhood, but at the time I didn’t realize that those things were abnormal. The awareness that something was truly wrong with me developed sometime in 2006, during the pregnancy of my second son. My health, stamina, motivation and confidence suffered tremendously after the delivery. I could never get back to my old self, so at 30 years of age, I began my mystery-diagnosis journey. Doctors kept testing and scanning me for autoimmune disorders, but the tests kept coming back clear while my pain and unusual symptoms progressed.”
“In 2015, a rheumatologist advised me that I had Fibromyalgia. I was given the option of pain meds and antidepressants, which I declined. The description of Fibromyalgia compared to my symptoms did not fit and I just knew it was wrong, so I chose to dismiss the diagnosis. I was told to exercise and that there was nothing else to do. So from there on, I kept trying to get back to my old self. The harder I would try to get physically and mentally fit, the worse I would get. It was a never-ending cycle that caused a lot of unnecessary damage. Had I known that I was battling a connective tissue disorder, I could have avoided certain exercises and stretches that ended up causing me more harm than good and I could have been focusing on the correct types of strengthening exercises. I just didn’t know.”
“I continued seeing more doctors and they kept running more tests until March of 2021. A rheumatologist noticed my joint hypermobility while I was fidgeting in the exam room chair. Although he was able to recognize the problem, he wasn’t educated enough on the disorder to go any further with it. I am very grateful that he was able to point me in the right direction, but it is really disheartening to recall how so many doctors repeatedly missed something so important that should have been so simple for them to recognize.” Stacey’s desire is to help EDS Louisiana bring awareness and education throughout our state so that others won’t have to needlessly suffer, without answers, as she has had to.
Chelsea Hess
Baton Rouge, Louisiana
Research & Resources Director
Chelsea is our Research & Resources Director. She is originally from rural North Carolina. She is in the process of finishing up graduate school at LSU. She began noticing many symptoms progressing a few years ago and finally received the diagnosis of Hypermobility Spectrum Disorder (HSD) in January of 2019 after 26 years of unexplained pain and comorbidities.
Here in Louisiana, she found a community far away from home when April Torres reached out to her, in need of help developing what we now know as EDS Louisiana, Inc. Since then, Chelsea has enjoyed being a part of the growing EDS community in Louisiana and is passionate about increasing public awareness about EDS/HSD and other related conditions, especially through education within the college setting. She has always enjoyed doing research and is now excited about heading up our Research & Resources Department.
Jessica R. Nolley
Livingston, Louisiana
Zebra Outreach Support
Jessica is a smart, strong-willed mother of two little zebras. She is married to a hard-working man. She loves adventures and really feels grounded when she's in nature. She loves God with all of her heart and she leans on Him with every trial that comes her way.
Jessica began noticing disabling symptoms in 2017, and sought out medical help. She was sent to many appointments, tests and referrals. Her pain, fatigue, and multiple symptoms were not lining up with any of her diagnoses. After a very long and drawn-out battle, Jessica was finally diagnosed with Hypermobile Ehlers Danlos Syndrome in 2019. Soon after, she also learned she suffers with Dysautonomia and Gastroparesis.
Jessica graduated from military school with honors and continued her education with the Louisiana National Guard Challenge program and received a degree in carpentry. She has always been a very hard-working woman who hasn’t been afraid to get her hands dirty and she often worked side-by-side with men. Before Jessica began getting sick, she worked in management. Currently, her disorders prevent her from doing many of the things she likes to do, but it hasn’t stopped her. She’s learned that she just needs to modify what she does and how she does it. She has always enjoyed mountain climbing, hiking, fishing, and trips to the beach. She ran track in high school and was a first seat clarinetist in the band.
After fighting for her own health and succeeding, she’s now developed a love for helping others. Jessica is now assisting the team of leaders in the EDS Louisiana, Inc. where she enjoys doing research and reaching out to help others, like herself, to help connect the dots in this rare, yet not so rare, disorder.