Ashleigh’s MiniONE®
“I had little to no leakage with the MiniONE® and the small design boosted my self-confidence as an adult with medical devices.”
Ashleigh
My name is Ashleigh Paterson, and I am a patient care specialist and an AMT ambassador for First Medical in South Africa; and an ambassador for Rare Diseases South Africa. I have Ehlers-Danlos Syndrome (EDS), a genetic condition that affects the connective tissue and collagen which is found all over your body. Additionally, I have autonomic neuropathy, CRPS, postural orthodontic hypertension, mast cell activation syndrome, neurogenic/atonic bladder, Chiara type one malformation, epilepsy, and septic arthritis (with tendinitis and bursitis).
My journey with feeding tubes has involved NG, NJ, PEG, GJ, and straight J tubes to provide nutrition and medication because I was unable to tolerate enough oral intake to maintain my health. EDS also causes very soft, elastic skin that tears easily and heals slowly and because of this, with my previous device, my stoma was constantly getting infected and leaking which would leave the site very raw and painful.
I chatted online with patients in other countries that had experienced the same problem but got much better results with the MiniONE® Balloon Button. So, after four years of using the same device, I decided to try using the AMT MiniONE® instead. My doctor managed to order the device, replace my old device, and within a week my stoma cleared up! The new button was a perfect fit against the shape of my abdomen and allowed for bloating without becoming too tight and leaving indentations like the previous buttons did. I had little to no leakage with the MiniONE® and the small design boosted my self-confidence as an adult with medical devices. I also love that they glow in the dark, this was really useful during nighttime feeds and also made me smile each time I would notice the little green glowing ports. The AMT feed sets are also softer and lasted double the amount of time!
In January of this year, I was nearing my next change and I was determined to keep using the MiniONE®! I was put into contact with a manager of the First Medical Company and I expressed how much I thought this device could help so many within the feeding tube community in South Africa. I was surprised that they were not commonly used or yet recognized as an option to most patients where I’m from. I had been involved in the feeding tube community for years, and had started my own support group for families and patients.
I really want to be a part of making better options more accessible to patients and am trying my best to advocate where I can.
Although this first year has been full of challenges like COVID, the MiniONE® is becoming more and more popular in South Africa and I’m so excited to be able to be a part of introducing a better range of devices that can completely change the lives of so many patients!