Help Millie fight Ehlers Danlos syndrome and its life threatening complications

on 25 Nov 2019

Leanne asks

Hi Janine,

Our daughter is 18 years old and like Millie has EDS.

I wish you the very best outcome possible for your beautiful daughter. We share the same story and Caitlin is currently treated in Auckland. Her stomach is also beginning to fail. I read with hope that you have found pain relief and was hoping you would share that with us.

We have tried many but nothing is working, her dislocations and life are filled with pain.

I sincerely wish you and your family the very best.

Leanne

Janine

Hi Leanne,

I am heartbroken to hear your story is similar to ours as we know just how tough it is. Currently, she is taking tramadol, gabapentin and CBD oil in addition to steroids and other medication for her Behcet’s disease and is still in massive amounts of pain. Unfortunately, this pain relief only takes the edge of the pain for Millie (ie it lessens the radiating burning sensation she gets throughout her body, meaning she is able to semi-function). When the update was posted she had just started pain meds, she quickly built up a tolerance and we constantly altering what she is taking in the hope of finding something more effective. I am sorry for perhaps giving you false hope.

We also wish the very best for you and your family. Millie is also 18 and we have both found this whole journey very isolating as I am sure you can relate to. We would be very interested to hear Caitlin's story, feel free to contact us anytime.

Janine