My name is Emma-Jane, and I’m a 31-year-old musician, wife and mother to one very special 2 year old boy who has additional needs. This year I have spent 45 days in hospital away from my family.

Over the past year, my life has been turned upside down while enduring severe Gastroparesis caused by Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that affects every part of the body. There is no cure, only management of the next part of my body that decides to give in. I am in pain every single day with this disorder. I have chronic pain from bulging discs to shoulder in impingement because the surrounding tissues are too lax to hold my joints in place. This leads to frequent subluxation and even full dislocation. This currently requires steroid injections and another prospective surgery. There is a very promising specialised physiotherapy available for this but costs €150/session and, some new research on Vagus Nerve Stimulatior  but I can’t have that money lost on Noah’s own developmental therapies that I have fought so hard for access. In my case, the disorder has caused other co morbidities, Postural Orthostatic Tachycardia Syndrome and Gastroparesis, leaving me unable to eat without severe vomiting. 

 

My journey began with an NJ tube last March. It completely changed my life having adequate nutrition but it came with constant infections and frequent dislodging, often needing replacement every two weeks instead of the usual three months.

In August, doctors decided to place a more permanent PEG tube directly into my stomach. Unfortunately, the surgery resulted in multiple complications. The anaesthetic didn’t work properly, the correct tube could not be placed, and I suffered two separate gastric leaks. The pain was indescribable, and I spent two weeks in hospital recovering. Because the tube placed wasn’t safe to use, I had to continue with the NJ tube until a second surgery could be done. Although things had improved, I had constant severe pain from the PEG at home. However, that second surgery was repeatedly delayed. I was still too weak from the first operation, further infections, and logistical issues. During this time, my NJ tube broke, leaving me without a way to feed myself. Over six weeks, I lost 10kg, became dangerously weak, and eventually collapsed at home, leading to another emergency admission. I was placed on TPN (Total Parenteral Nutrition) through a PICC line into my heart to keep me stable until they could attempt the correct PEG placement. When the PEG was finally inserted, the same complications happened again. After severe pain and failed attempts to fix the issue, the only option was to remove it entirely and return to NJ feeding.

This has been one of the most traumatic periods of my life. I spent months of being gaslit by male doctors, told I had an eating disorder, stress, even sinusitis before I got a diagnosis. I am very lucky to finally find a wonderful consultant but even so, I still have to fight and advocate every single day with other medical staff and I am exhausted. Unfortunately, this is still a very common thread for woman and has taken an immense toll. My central concern during this time has been my son, who is Autistic. The disruption to his regimented routine, still trying to fight for his own therapies, researching any supports I can find. I have been so lucky to have wonderful family to step in with these routines, and taken Noah in while my husband works a job with incredibly long hours, For this, I will be forever grateful.

As if the physical and emotional toll were not enough, I have been told I now have a significant excess in hospital m bills, as my health insurance only covers 40%. This means a capped €2,000 bill for each admission and any further that will follow in the future, I have had 3 in the last 9 months. Due to my condition being very rare in Ireland, the only consultant who would take me on operates in a high-tech private hospital, and I also require consultations with Orthopaedics, Neurology, Cardiology and Gastrentrology, with a specialist in the UK and therapies to support my EDS care, many of which have zero or only partial coverage from insurance.

I never imagined I would be in a position where I’d need to ask for financial help, and it’s incredibly hard for me to do so. But after exhausting every option and with my health rapidly declining, I’ve realised I can’t get through this by myself. This year alone I have spent over €15,000 with further bills still overdue and this doesn’t include the continuing cost of care that I will need ongoing for basic quality of life. I just cannot keep up with the continuing costs that just keep coming.

I’m sharing my story because I truly need help. Any contribution—no matter how small—would bring me closer to accessing the care I desperately need and allow me to focus on getting well for myself and for my little boy.

Thank you so much for reading, and for any support you can offer.