Millie's Miracle

Hi Janine,

I too have Hypermobile EDS, and I think that I may be able to help.

Please reach out to me at andtoesandtoes@icloud.com

Cheers :)

Luke

Hi Janine,

Following on from your update i emailed a friend in Europe to see if he could offer any advice. This is what i got back.

Quote:

Ehlers Danlos Syndrome (of which there are - as I have read - 13 different additions) is a genetic disease.

addition) is a genetic disease that cannot be treated curatively.

Since Millie ended up with Prof Sandmann in Düsseldorf, I assume that Millie's main symptoms are angiological.

With all these compression syndromes there is always the danger of a rupture of a main artery and I can understand

why surgeons are reluctant.

The website of the German Ehlers Danlos Society provides a list of doctors recommended by the self-help organisation.

recommended by the self-help organisation:

https://www.ehlers-danlos-initiative.de/index.php/verein/organisation

A specialist from Dresden called Weiss is recommended as an angiologist. Specialists in Cologne and Cottbus are also

listed. Sandmann does not appear on the list.

Millie is probably best helped with adequate pain therapy.

Unquote

I hope that this may prove helpful to you and Millie.

Kindest Wishes

A Supporter.

Kia ora Janine, my name's Sam and I'm a journalist with RNZ. Came across your Givealittle for Millie - I'm very sorry to hear your situation. It's stories like yours which highlight the human toll of MIQ, and we'd really appreciate if you'd be open to talking to us at some point about MIQ. If you are comfortable with that, let me know your contact number and details. Feel free to email to here - samuel.wat@rnz.co.nz - Please take care and best wishes to you and Millie!