Let’s kick MALS butt together!
THE WOODLANDS, TX -- In late 2021, Claire Swanson and her mother, Natalie collaborated on an article with us regarding MALS (Median arcuate ligament syndrome). MALS is a rare medical condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).
As a result of the collaboration, several parents have contacted Mrs Swanson inquiring as to if their children could possibly have MALS. Today, a young girl from The Woodlands has MALS surgery at John's Hopkins.
MALS AWARENESS is working. If your child exhibits the following symptoms, please reach out to Mrs Swanson.
• Pain in the upper middle stomach area, which may go away when leaning forward.
• Stomach pain after eating, exercising or shifting body position.
• Fear of eating food due to pain, leading to significant weight loss — usually greater than 20 pounds (9.1
• Nausea and vomiting.
Claire has been suffering from MALS and other related conditions her whole life and was only diagnosed correctly a few years ago. Claire had successful MALS surgery in 2021. It has been a long, hard and painful road for Claire as you will learn from her description of the pain she has experienced.
'It was selfish and all-consuming pain. It was the type of pain that humbled you. No amount of thrashing or screaming could take it away. With each exhale it ripped through my upper abdominal organs, causing louder screams and implanting fear deep into my memory. Many nights would be spent on the floor of my bathroom. I’d lay on the cool tile, too exhausted to sit up, as my parents scrambled to try and find me an ounce of relief from my collection of orange bottles. No matter the effort, the pain couldn’t go unfelt, so more tears slid down my cheeks and louder screams left my mouth. Some nights it would become so severe I didn’t think I was going to outlast the agony. On those nights, I pleaded with God. I felt as though I couldn’t stand another moment, another breath, filled with only suffering. I felt imprisoned in my own body with no choice but to endure what I was given. Through these times of haunting torment, I was convinced I’d been forgotten, put at the foot of God’s never-ending to-do list of miracles. The absolute hopelessness was suffocating. When your entire body is in such misery it scars, not only physically, but emotionally. I can recall the sheer terror in my mom’s eyes, as she’d start to notice that there wasn’t anything she could do to soothe away the pain devouring me. I also recount, the first time my older brother, Reece, saw what was happening to me, the panic and shock on his face caused a new pain. The person I admired for never hesitating or worrying, paused, and when I caught the concern on his face, destruction hit me. At that moment I registered my circumstances and concluded I had no choice but to muster some grit and fight, to earn a life free of pain. I not only had to fight to escape the agony that somehow encapsulated my body, but also the heartbreak that was housed in my family's. So, I did the only thing I could do, fight.'
Parents...if your child exhibits any symptoms and is experiencing ongoing excruciating pain, we urge you to investigate to see if MALS is the culprit. You can contact Natalie Swanson as well as a number of specialists that are listed at the conclusion of the 2021 article. Please click the following link. If you haven't read this informative article, please do so and do note the contact information.
As Mrs Swanson has stated...Let's kick MALS butt together!
Homebound Student Claire Swanson's Journey with Mast Cell Disease PLUS