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Love2Lexy

Organised for: Alexandra Barrable

Hello and thanks for coming by. 

My name is Lexy, and the adorable pup by my side 24/7 is Jaxx. 

 

About three years ago I was diagnosed with a rare genetic condition, called Ehlers Danlos Syndrome. I have the most common type of Hypermobile EDS. It's a horrible, multi-systemic condition that wreaks havoc on the sufferer, and can affect any number of things throughout the body. For me, personally, I experience a lot of pain and joint subluxations (partial dislocations) and often, full dislocations. 

 

While living in the US I had sought treatment to find out why my neck was so constantly painful, why I had trouble supporting my head upright, and why I almost constantly had a headache, that was only relieved by laying down. While in the Us, I was also diagnosed with Postural orthostatic tachycardia syndrome, Chiari malformation and we still suspect Mast Cell activation syndrome. 

 

With few answers, and a need to return home and escape my troubled marriage, I left the US. Upon returning home, shortly before Christmas, I started slipping in and out of consciousness. It was so quick and successive that I was unable to tell anyone what was happening or reach out for help. My blood pressure was tanking but we did not know why. I sought answers from doctors, neurologists and neurosurgeon team at Queen's square, I was sent for a supine MRI upon which they told me that I did have Chiari but that it was ''not symptomatic'' because of it's size. 

 

Initially, I accepted these answers, why would they not be correct? But my condition declined further and after an incident with my University bed collapsing, I was left unable to lift my head from my pillow due to extreme pain and dizziness. I almost missed Christmas with my family as I was unable to travel for a two week period leading up to Christmas day. 

 

I was frustrated and desperate to know what was going on. I emailed a doctor in Spain, a specialist within our EDS community and found the price for a consultation. In between raising that money and sending my imaging off, I started falling unconscious when lowering my head down. I attended the A&E in Barnet, where I was discharged because they couldn't work out why this was happening. 

 

By the time I sent my images and received my report, my speech was impaired, fatigue was running rampant, and the period of time in which I can remain upright has greatly lessened (about two hours at a time without a break). My gait, breathing and eyesight are all impaired, sporadically too. 

 

I opened the report expecting a few levels of my neck needing to be fused, what I read was shocking. My neck is very unstable, I have little to no spinal fluid flow. I was diagnosed with Chiari malformation and recommended a decompression surgery for those symptoms and the csf flow, Cervical cranial instability and Antalo-axial instability. What this means for me is that I need my whole neck fused, hard. 

 

On the 8th of July I flew out, accompanied by my best friend, to Barcelona to have further imaging and meet with my surgeon. It was confirmed that I do need these surgeries urgently, or I will simply continue to decline at the rapid rate I have been. 

 

I have been given a rough estimate of 50,000 gbp, and understandable, this isn't change I can grab from the sofa cushions, I need help to save my life. That isn't easy to say. Things have deteriorated rapidly since the bed incident, slipping in and out of conciousness, I lost control of my bladder and my spo2 stats drop frequently to below 90. I am terrified of how far I can decline, and what my body can come back from. 

 

So please, if you have anything to spare, please consider helping. 

 

Frequently asked questions: 

- Why wont the NHS fund this - 

The NHS have a few reasons, the first is that they don't like operating on people with connective tissue issues, due to the potential complications and risks we pose. They also dispute, despite numerous success stories, that the surgery is beneficial. They don't have a surgeon qualified to do so, on EDS patients either. 

- Wont they fund in the EU - 

They might, and it is certainly something I will be looking into, but at any rate they refund, not before the surgery. 

- Why Barcelona - 

There are only three surgeons, at present, who are actually qualified to perform these surgeries and the least expensive is in Barcelona. This also allows my family access to visit me, without endangering my mothers health. 

 

 

Organised by

Alexandra Barrable

Mily Riley contributed £10

Talia Nevin contributed £5

Mily Riley contributed £15

Kage Davies contributed £25

Nina Wulf contributed

Lisa Hafey contributed

Anonymous contributed £10

Anonymous contributed £10

Mily Riley contributed £10

Harrison Goodair contributed £50

Natalie Stewart contributed

Fiona Brett contributed £5

Elise contributed £20

Anna contributed £10

Jess Louise contributed £10

Anonymous contributed £10

6 August 2018
Mily Riley
❤️