❤️Help Me Heal: Help Fund my Recovery After Life-Changing MALS Surgery❤️

After years of being misdiagnosed, dismissed, and disbelieved, I finally had life-saving surgery for Median Arcuate Ligament Syndrome (MALS) on Monday last week and I’m still in hospital recovering

MALS is a rare and incredibly painful abdominal compression syndrome that often goes unrecognised by healthcare systems. For years, my debilitating symptoms were wrongly dismissed as psychological. I was labelled, judged, and at times even threatened with being sectioned, when what I truly needed was compassion, proper investigation, and appropriate medical care.

Every single breath I’ve taken for the past four years has intensified my pain. I’ve lived in a body constantly under siege—unable to eat solid food, surviving on a liquid-only diet, and battling severe nausea, fatigue, and chronic pain. I’ve unintentionally lost over ten and a half stone (more than 66 kg) and become severely malnourished. Years of being hunched and twisted in agony have severely affected my posture, mobility, and strength.

Last week, I finally underwent major abdominal surgery. My median arcuate ligament was removed—it had been compressing my celiac artery, restricting blood flow to my intestines and abdominal organs. The surgeon also removed some of my celiac plexus ganglion nerves to relieve the extreme pain caused by this compression.

These nerves will regrow in time—but to heal properly, I urgently need to provide my body with the right nutrients and specialist support. It's also hoped that this surgery will improve my Postural Orthostatic Tachycardia Syndrome (PoTS), but I’ll need to work closely with a clinical exercise physiologist to safely rebuild my strength and improve the functioning of my autonomic nervous system

I’ve also had to take sick leave from my postgraduate research degree, where I study how to reduce diagnostic delays for autistic people with Ehlers-Danlos Syndrome. My work is deeply personal and urgent—it's driven by lived experience, and I’m determined to return as soon as possible. But to do that, I need time, resources, and support to get well enough to re-engage with the academic work I love.

I’m fundraising to help cover the essential costs of post-surgical rehabilitation, including:

- Vital domestic help at home when I am discharged from hospital after my surgery as the hospital and my Local Authority have refused to put post-op hospital discharge care in place (they don’t understand my complex fluctuating medical conditions like POTS and therefore don’t understand my care and support needs)

- Relaxation and body-based therapies to help calm my nervous system and manage pain

- Specialist physiotherapy and movement therapy to support my posture, mobility, and overall function after years of physical deconditioning

- Support from a trauma-informed, neuro-affirmative nutritionist to reintroduce solid food safely—while avoiding potentially fatal complications like re-feeding syndrome

- Clinical exercise physiology input to improve my cardiovascular stability, manage PoTS symptoms, and support my autonomic nervous system

- Mental health support to process the trauma of years of dismissal, medical gaslighting, and neglect

- Daily living support and adaptive equipment during this vulnerable recovery period

If you're a nutritionist, functional health practitioner, wellbeing practitioner, wellbeing faciliator or event organiser and could offer a small number of sessions, therapies, or services free of charge, I would be incredibly grateful. In return, I can offer you some of my time, knowledge, skills and positive energy. I have skills in photography, blog writing, digital marketing, reviews/testimonials, or professional collaborations.

I bring a wide range of lived and learned expertise:

- MSc in Clinical & Developmental Neuropsychology

- Skills in writing, blogging, editing, and peer reviewing

- Experience as a patient expert, ambassador, speaker, trainer, and expert by experience

- Photographer

I’ve fought so hard to get to this point—now, I need help to truly heal.

Every donation, no matter how small, will help me rebuild my strength, regain my independence, and return to the work I’m so passionate about. Your support will also help raise awareness of rare diseases like MALS and the devastating effects of medical gaslighting, particularly for autistic and neurodivergent people.

❤️Please donate or share if you can ❤️ H me move from survival into thriving—so I can continue my journey, not just to recover, but to change the system for others like me. ❤️

Thank you for