Pam's Story
An explanation written by Pam as to how we have got to this stage and why we need to fundraise.
I need urgent surgery overseas or I will likely keep deteriorating until my body gives in.
It's going to cost around $180K so we need all the help we can to get there.
Unfortunately, the New Zealand health system is not acknowledging AVCS and barely any Dr's diagnose and help manage EDS. So in order to recieve surgery and the care I need to get back into participating in life, rather than simply surviving, I need to go overseas to see one of a handful of doctors who perform AVCS surgery all in one operation.
I've had many illnesses and injuries throughout my life. The main health events were at birth, 9 years, 18 years, 30 and 38. The last one has not faded into the background like the others. In fact, it's getting worse. Since Jan 1st this year, my health has deteriorated quickly. I can barely get out of bed.
I suffer with many symptoms but the worst are a debilitating left flank pain and the inability to eat and drink due to abdominal pain and nausea.
In September 2023, I was diagnosed with a rare disorder, Ehlers Danlos Syndrome (EDS) a recent diagnosis of even rarer Abdominal Vascular Compression Syndromes (AVCS).
I have 2 young school children. A normal day involves about 13 hours sleep. In the morning, I say goodbye to my kids as they go off to school, I rest/sleep in bed then wake when the kids get home and retreat to the couch where I lay while entertaining afternoon tea. Most of the time, I will make it to the table to sit with the family for dinner, then lay on the bed while the kids shower, read them a book, kiss them good night and go to sleep.
During the day, I also have to manage and take my medication, change my feeds and flush my tubes at least twice. I heat up heat packs multiple times. These are my only tasks. They are simple but they alone can be a struggle to complete some days. Add in basic hygiene and I'm already exhausted and aching in pain. Most days I don't do all of it.
I can't do household jobs. My husband, Jon, has taken on all the household tasks, along with working full time as a teacher.
There is not much living life going on at all. I miss playing with my boys, being out in nature, bushwalks, visiting family and friends, going out to eat, holidays, bike rides, photography...
I need some life back. I know that even with this AVCS surgery, I will always have EDS. But I also know that with managing EDS symptoms, I will be able to live a really fulfilling life because my pain and symptoms will be greatly reduced.
Please help me get overseas for surgery.
