EDS LOUISIANA - Key Persons
Vice President Angelle Painter was 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.
Today she works for Heart of Hospice as the Manager of Volunteer Services and the We Honor Veterans Manager. 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's 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, Eliza, was diagnosed with EDS that she found out the real reason behind all of 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 both diagnosed with Hypermobile EDS on the same day. 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. Eventually, her youngest daughter, Tayla, was diagnosed as well.
After sharing the diagnosis of herself and Eliza with other medical professionals, it became obvious that awareness and knowledge of this condition was distressingly low. She searched online for support but discovered Louisiana offered none for those with Ehlers Danlos syndromes. Angelle decided to create a Facebook group in hopes of meeting other local families to share their stories, information, and experiences about the different forms of EDS. Originally Angelle named the group "Louisiana EDS Zebras", but it now goes by the "EDS Louisiana Zebras" after merging with EDS Louisiana, Inc. Together, it now hosts over 600 members.
Angelle is 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 achieve. Recently, she has become a Health Coach as well. 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! https://www.facebook.com/AngelleWaltonPainter
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.
Job Titles:
- 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 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.
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.
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.
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.
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 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).
Job Titles:
- Executive Assistant
- 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.
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.