JACKSONVILLE, Fla. – No one knows their body better than themselves.
What would you do if you knew something was seriously wrong but, time and time again, doctors would not take your concerns seriously?
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That is a part of one Jacksonville woman’s experience as she battles some significant health challenges.
“I just want to be able to live,” said Madison Lloyd. “I want to be able to go back to school and start a life for myself.”
Lloyd is 23 years old and lives with some life-altering conditions that she had to fight to get diagnosed.
News4JAX sat down with Lloyd to learn about her story, the lessons she learned, and what she wants others to know.
Inside the Lloyd household, a typical morning with Madison, her mother, Andrea, and Madison’s grandfather includes breakfast, playing a board game at the table, and the occasional visit by their dog, Peanut.
However, at any given moment, without warning, Madison can lose her balance and needs someone to catch her if she were to fall. Usually her mother is there.
Several times throughout the day, Madison needs to lie down because of pain in her neck, back, as well as feelings of disorientation.
She even says, “it feels like her neck is going to fall off” because of the instability.
“There are days when I don’t feel like I’m going to get any better,” Madison said.
She was recently diagnosed with several disorders, including one known as hypermobile EDS, a syndrome that affects the quality of collagen, which is supposed to support the many tissues in the body.
Another is Cranio-Cervical Instability, also called CCI, a condition where the ligaments and connective tissues supporting the head and neck are weakened or damaged, leading to excessive movement between the skull and upper cervical spine.
Madison was also diagnosed with tethered spinal cord syndrome, which is when the spinal cord is abnormally attached to surrounding tissues and limits its movement.
In Madison’s case, her muscles have to work overtime for her to complete simple tasks, like writing her name, causing her pain, fatigue and instability.
“Just walking was so hard because I couldn’t control my left leg,” she said. “Walking was one thing I could not do. I could not go to the bathroom alone. I could not shower. I cannot dress myself. Everything I did, I had to have someone with me 24/7 to help me do it.”
Although Madison is getting some answers now to better treat her conditions, she had to go close to a year and a half without a diagnosis.
She says more than a dozen doctors, including several in the Jacksonville area, either told her things like she was “faking,” needed a psychiatrist, or they just did not know how to treat her.
“She is too young,” Andrea said some doctors told her daughter. “She is too pretty to be this hurt. Those are the answers that we would get as she was going into these doctors’ appointments in a wheelchair, couldn’t walk, [and] would have seizures.”
“It was the worst thing not being able to help your child,” she said.
“I just tried to rely on my faith and know that everything happens for a reason,” Madison said. “I’m going through this journey for a reason.”
Leading up to all of this, Madison says she was already diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome (POTS) when she was 16, which would lead to her sometimes getting dizzy and passing out.
What happened in August 2021 really changed the course of her life.
Madison was in a car crash and her body would not heal properly.
“After the accident, I feel like I could not keep myself off the ground,” she said.
She would have repeated seizures, including a really bad experience one day.
“The worst that she had was 24 seizures in five hours,” Andrea said about Madison. “That is when we knew something is definitely wrong.”
What Madison did not know at the time was the effects of all the disorders she had and their comorbidities revealed themselves more following that crash.
She says going 18 months without getting the help she needed not only delayed intervention, but also allowed her conditions to progress and worsen.
Through it all, Madison continues living life the best she can.
“Some of it is happy tears and some of it is sad tears,” her mother, Andrea said. “I am so proud of [Madison]. This has been very, very hard, emotionally, physically, financially, but somehow we have been able to get through it.”
Then came the breakthrough Madison was desperately waiting for.
Dr. Reynaldo Pardo, a pain doctor, referred her to a physician in Maryland named Dr. Fraser Henderson.
Both men knew Madison has serious issues with her body and were determined to help.
In March 2023, Henderson ultimately diagnosed Madison with five different conditions in her first visit.
He has since diagnosed her with a total of 14 conditions.
So far, Madison has had seven surgeries to help get her back on track.
“I finally felt relieved,” she said. “It was something that I prayed for so long.”
“When we met Dr. Henderson, you just felt so at peace,” Andrea said. “You just know that there are doctors out there still who are willing to push for the patient.”
Madison’s situation is not uncommon.
Women, especially young women, are statistically more likely to have their symptoms and complaints dismissed as emotional by medical professionals.
It is worse when chronic pain is involved.
Dr. Marcia Perretto, based out of South Florida, is a doctor of physical therapy and a health care advocate.
“Their bodies just don’t fit [a] textbook,” Perretto said. “Their voices are not really being taken seriously because it is just too many symptoms for someone so young who looks so good to be experiencing. I get so many patients through my doors here where they will sit in front of me and break down into tears because they have never been able to be heard.”
Perretto says there is a way your voice can be heard because there are some things you can do right now.
She says to document everything happening to your body. That includes symptoms, changes, things that help, and things that do not. Bringing someone with you to your appointments for support can also be helpful.
Also, do not be afraid to change health care providers if you feel like you are not being listened to or understood.
“You are not being difficult,” Perretto said. “You are just being responsible for your health. So fight for it.”
Educate yourself so you can be prepared to help inform a doctor, who may be unfamiliar with your condition. Go to your doctor appointments prepared to answer any questions in depth. Be willing to provide examples of what you are experiencing.
Use groups and platforms to share stories with other people.
Be willing to be the loudest voice in the room until a medical professional really listens to you. That could even mean having to go out of town for help.
“If you build a strong team around you that listens, and that is willing, even if they do not understand fully what is happening, but are willing to listen and walk the walk with you, that is already a game changer,” Perretto said.
Madison and Andrea say faith is what leads them, even on the days they feel that is all they have.
“[Madison] is a fighter,” Andrea said about her daughter. “That is why I know that she is going to get through it.”
Then they remember they have each other through this fight.
“It is hard to talk about, but I feel so blessed to have [Andrea],” Madison said about her mother’s unwavering support. “When you feel that no one is listening to you, you are alone, and that you are never going to get help, having someone there to support you through everything, and to believe you the whole time is so reassuring.”
“We will make it through this because nobody is giving up on you,” Andrea said directly to Madison. “You have a good team and so many people love you. You just have to stay strong. You have been doing it, and we are going to get through it. There is light at the end of the tunnel. I promise.”
Madison says her goal is to eventually be able to go to school and pursue a career as a social worker-- all while continuing to be an advocate for others.
Unfortunately, she says she has hit a slight roadblock in her treatment because Madison is having to address a pretty delicate situation with her spine.
She, her mother and several doctors in different parts of the country, including in Florida, are discussing the best course of action to handle that, which might include a spinal fusion in the future.
Madison continues raising money to help pay for medical costs and additional treatment expenses. If you are interested in contributing, a GoFundMe raising money for medical expenses can be found here.
