An orthotic body suit could change Pixie's life

Hi everyone,

 

My name is Shana Miller—but most people know me as Pixie. I’m 33.

I have hypermobile type Ehlers Danlos Syndrome (EDS).



I have two amazing children, I love gardening, and I’ve been studying neuroscience at university.

 

But lately, EDS has been getting in the way of all of that. EDS is a genetic condition in the family of connective tissue disorders, and affects only around 1 in 5000 people.

It systemically affects collagen production. Collagen is the most abundant protein in the body, so this leads to a whole range of symptoms. My joints subluxate (partially dislocate) every day, and can fully dislocate very easily. This happens in almost all my joints – but my shoulders, hips, fingers, toes and wrists are the most frequently affected. As you can imagine, this is incredibly painful!

 

I battle with constant fatigue due to narcolepsy type II/hypersomnia. Yet I can’t get a decent night’s sleep, as dislocations and subluxations happen more readily when my body is in a relaxed position. There’s a wide array of other symptoms that come with EDS affecting my overall quality of life: thin, stretchy fragile skin that is easily irritated; hypersensitivity to things in food, the environment and medications; bad headaches and migraines (and more). Pain medications tend to be ineffective or otherwise cause significant reactions. Cooking, dressing and other daily tasks leave me in agony. I often need help from my children to avoid dislocating joints.

 

A specially-designed compression suit will help me to stay on my feet, get a good night’s rest, be more present for my children, and work towards my dream of helping others.

 

Compression garments will reduce my injuries, enabling me to have a reasonable quality of life and participate in my community. Because of uneven pressure and sensitivity to glues, I cannot use a lot of braces and strapping tapes. Dynamic Movement Orthoses (DMO) can be very helpful for people with hypermobile EDS.

 

I am trying to get a body suit, gloves and socks that will hold my joints in place. It’s become harder over time as my health has deteriorated to fight for my dream to help other people. Many of you would be aware of how tragically limited the public health system can be for chronic conditions, and I can no longer wait for government funding to provide me with these essential garments.

 

It has also become increasingly difficult to get out of my house because of injuring so easily.

 

I dream of being able to hug my children without fear of dislocating my shoulders or ribs.

 


I dream of being a researcher in the field of neuroscience – but to have a chance at this, I need this DMO compression suit.

To see what the suit is like, you can check out this video of another EDS patient who was able to get a DMO suit:

https://www.youtube.com/watch?v=vmbNBs4DPhQ
 



Will you help me to realise my dreams and live a fuller life?