Brisbane woman Jayde Kilgour diagnosed with rare MALS condition

A young Brisbane woman, so unwell her devoted father sobs after each visit, has revealed the harrowing web of mystery illnesses that have ultimately taken away her ability to eat and shared her inspirational determination to find a life beyond them.

A 23-year-old Brisbane woman’s growing list of debilitating illnesses which have left her having to eat through a tube for 16 hours a day reduces her “helpless” father to tears each upon each embrace.

Once an active outdoors adventurer, pharmacy assistant Jayde Kilgour now struggles with her day-to-day tasks, dealing with debilitating symptoms related to a number of rare medical conditions.

Since she was a child, Ms Kilgour would present to doctors with chronic pain, nausea, vomiting, bloating and reflux, however the cause was a mystery until recently when a long-awaited diagnosis of Median Arcuate Ligament Syndrome (MALS) was revealed.

The symptoms have restricted Ms Kilgour’s daily life significantly and put an emotional toll on her family.

Ms Kilgour has lost 25 percent of her bodyweight in the last 18 months, now weighing just 48 kilograms.

The once active girl’s life has been reduced in essence to waking up, working full-time, coming home and collapsing into bed, often before 6pm.

Jayde Kilgour (left) was recently diagnosed with the rare condition Median Arcuate Ligament Syndrome (MALS). Picture: Contributed

“I currently have a very restricted social life,” Ms Kilgour said.

“I am constantly fatigued and have little energy for social activities.

“I wasn’t able to enjoy a Christmas meal with my family.”

Her parents live in Kingaroy and weekend trips to visit take it out of Ms Kilgour.

“The most difficult thing has been the impact this has had on my family and the worry this is causing my parents, who feel so helpless.

“Dad tries really hard to hide it, and he is the strongest man I know but I can’t tell you how much it breaks my heart to hear the sniffles and to see the bloodshot watery eyes every time I step out of my dads cuddles, I feel like he’s terrified to let me go.

“I’ve come to a point where I have realised that I already live in a regular state of pain and discomfort from all my issues.

“That in itself is really sucky and deflating so I try my absolute hardest to keep my mindset positive.

“Everything is temporary and at some point, one way or another, this will all come to an end.”

Ms Kilgour’s MALS diagnosis has led to a second rare and potentially life-threatening condition Superior Mesenteric Artery Syndrome (SMA), as well as Nutcracker Syndrome which involves the compression of the left renal vein.

Jayde Kilgour hugging her father, who lives in Kingaroy. Picture: Contributed

Doctors also suspect she has the genetic connective tissue disorder Hypermobile Ehlers-Danlos Syndrome (hEDS), which may be the reason for all of these conditions.

Sadly the 23-year-old is not eligible for financial support due to being “stuck in the gap” of what determines the difference between disability and chronic illness.

“When I was diagnosed with the above conditions, it actually gave me a sense of relief as I had been suffering from so many debilitating symptoms and seeking answers from doctors and specialists for as long as I can remember, Ms Kilgour said.

“Despite the relief, I also felt overwhelmed because it’s supposed to be so rare that no one really has a blanket answer of how or what can be done to fix the issues, plus the talks of potentially having to have the nasojejunal tube put in, if I continued to go downhill, then also the prospect of surgery.

“There is also the fear of the unknown – can these conditions be treated successfully?”

Jayde Kilgour has lost 25 percent of her bodyweight in the last 18 months due to her rare conditions and debilitating symptoms. Picture: Contributed

Eight weeks ago a nasojejunal tube was placed in her nose, which provide 1500ml of nutritionally complete feeds over a span of 16 hours per day.

“No matter how hungry I am, or how much I’m craving something a few small bites will leave me extremely nauseated and unable to continue.

“My diet is restricted to tube fed liquids and foods of smoothie or liquid consistency to help prevent blockages that may lead to hospitalisation.

“Every four hours an alarm will go off for me to flush the line to avoid blockages, and another will go off again when the bottle is empty and due to be changed.

“They come in 500ml bottles so I have to make sure I have 3 of these on me along with enough syringes, the pump, bag and meds to get me through the day.”

The 23-year-old spent $18,000 of her own money in 2023, to fund specialist appointments, medications and tube feed supplies and continues still to work full-time, despite her gruelling symptoms.

The tube feed supplies cost over $1,000 per month.

Ms Kilgour and her partner Will like to spend their time exploring the outdoors, 4WD’ing and camping, when she’s able.

You can donate to support Jayde’s medical expenses and purchase of essential nutrients here.