Palmerston North, Manawatu-Wanganui
Sarah has hypermobile Ehlers Danlos Syndrome, a connective tissue disorder which effects the entire body. hEDS causes many issues with her digestive tract, over the last 7 years she has seen doctors, undergone tests, procedures, trialled diets & medications, however last year her health spiralled. Sarah vomits every time she eats or drinks and experiences debilitating pain. Symptom intensity has increased over this year & in the last month her health has spiralled further. Pain has spread everywhere, she forces herself to have tiny amounts of food/fluid. It’s hard to leave her bed, the pain, combined with a severe lack of nutrition - she is physically & mentally exhausted.
Dr Yeo is pretty sure based off my symptoms and scans that I will be eligible for the operation. I just need to have a diagnostic block done in Auckland first, which is done privately under general anaesthetic. If i have no pain when eating after the block, that will mean the surgery will definitely help. I’m hoping the block won’t be too far away since it’s being done privately. I will keep you guys updated on how that procedure goes. I’ll have a call with dr Yeo after the block to confirm the surgery. My gastro in Wellington is also going to order a couple scans to check for other compressions that can be found with MALS.
Sarah has a vascular compression called MALS, a compression on the main artery that goes from the heart to stomach and other organs. Vascular compressions are very misunderstood, getting help in NZ is proving impossible. Surgery can fix the compression and we believe it will improve Sarah’s quality of life & stop the pain. Sarah is having a zoom call with a surgeon from Sydney tomorrow to discuss surgery options & scans for other vascular compressions, commonly found in MALS patients. If scans show other compressions, we will need to go to Germany as there appears to be no doctors closer who can fix all these compressions. Professor Wilhelm Sandmann has an excellent team and does a lot of research on these issues. We’ll need to travel for surgery so frequent updates - Sydney or Germany?
Tests, consults, flights, hotel costs and possibly surgery fees.
Health update 9 March 2023
Thank you to every single one of you who donated and gave me a second shot at life. I will forever be grateful.
I have worked so hard to get better after my operation and it wasn’t easy. This has been such a huge battle, this journey has definitely left me with a lot of trauma and sometimes it’s really hard to think about what I had to go through. But I’m alive and doing so much better. I have been able to gain healthy weight, enjoy life again and experience new things. Not quite ready or able to work yet, but that’s my next step ! fully recovery isn’t until one year post op, today is 9 months since my surgery! Im still working on strengthening my abdominal muscles, which will help a lot with my severe back pain. Everyday is different, some days I have flares and it can be very scary. Im always terrified of things going downhill, especially when my body decides it doesn’t want to tolerate any food. Thankfully I always bounce back. I still deal with daily pain, which will never go away because of my connective tissue disorder. It’s still a challenge to eat and sometimes it’s very exhausting, but I push through the pain everyday. I’m just grateful that there have been massive improvements.
Once again, I am so grateful for all of you, thank you so much for your generosity. You are all amazing. Here’s an updated picture from Harry styles the other night
Thank you so much. I’m sorry you know first hand what it’s like the deal with horrible pain and symptoms and a medical system that doesn’t always have your back
Thank you ❤️ My mum is definitely my biggest supporter, I don’t think I would have survived this without her
Thank you ❤️
Thank you so much x
Thank you 💕 doing a lot better