Investment encourages growth.
Investment increases the appetite of the community around us to care, to give a shit, to invest in some way—even if it’s invisible to the economic spotlight. We all invest in our society in one way, shape, or form. Keep that opening statement with you while you take in the story below.
I’d like to talk about a very special young woman I’ve had the pleasure of knowing for some time. At the tender age of just 24, she is a mother to a young son. I have not seen courage or a fighting spirit like hers for a long time. She leaves me in constant awe—her battles are silent, and now they are becoming deafening. She suffers from a very rare condition called Fowler’s syndrome, alongside endometriosis.
What is Fowler’s Syndrome?
Fowler’s syndrome (urethral sphincter relaxation disorder) is a rare disorder in which the urethral sphincter fails to relax, preventing urine from being passed normally. It is most often seen in younger women, where abnormal electromyographic activity is detected.
Urinary retention is uncommon in young women. Fowler’s syndrome primarily presents between menarche and menopause, with the peak age of onset around 26 years. It is seen in about one-third of women who experience urinary retention.
The main symptom is the inability to urinate for a day or more, with no urgency to urinate, despite having a bladder volume of more than one liter. Normally, the urge is felt at 400–500ml. This leads to progressively increasing lower abdominal pain. The condition is often associated with Polycystic Ovary Syndrome (PCOS) and endometriosis.
Other symptoms may include impaired voiding, difficulty emptying the bladder, increased urinary frequency, and occasionally pain with urination. Incontinence is rare. Women with Fowler’s syndrome often find catheterisation extremely painful.
This can be a disabling condition—50% of women experience unexplained chronic pain, including abdominopelvic, back, leg, or widespread pain. The impact on quality of life is lifelong and devastating.
Her Story
What I have witnessed this young woman go through over the past year has stunned me. I’ve cried with her late at night while we exchanged messages. She has spent more days in hospital than out this year, battling ongoing complex infections requiring IV antibiotics, alongside painful and costly surgical interventions just to keep her a few steps away from sepsis—an extremely dangerous response to infection that seems, from a bird’s eye view, to loom almost weekly.
She has told me many times that she waits until she is sick enough before going to hospital—so that she is taken seriously and given the urgent care she desperately needs. Not only does she endure cycles of merciless antibiotics, but she must also navigate motherhood and the crushing financial burden of living with complex chronic illness.
To make matters worse, she now faces the impossible task of finding a urologist skilled enough to take on her case. So far, all have turned her away, saying simply that “her case is too complex.” I appreciate their honesty, but I struggle to understand how such a serious situation can be left idle, leaving this young mother in a dangerous limbo that could quite literally cost her life.
Why This Matters
I know only a few people with the courage and resilience of this 24-year-old mother. Only a few who could withstand her pain, her disappointment, and her relentless fight against a system that keeps shutting its doors.
My investment today is my time—to write her story and share it with you. To extend the opportunity for anyone who invests their time in reading this to also invest their heart. This is not just about money. This is about giving a damn. About saving a life. About saving a young boy’s mother.
We ask you: take a moment and think about another human being, just for one moment.
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Words By Marilyn Tuna 24/09/25
https://www.instagram.com/mybattlewithfs?igsh=amNyOTdsZ2o0Y3Nz
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