Hi there, my name is Laura. I’m 25 and was diagnosed with a rare, invisible genetic disease a couple of years ago. Here are some facts about me…

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  1. I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS is part of The Ehlers-Danlos Syndromes), Dysautonomia, Autonomic Dysfunction, Postural Tachycardia Syndrome (PoTS),  Autonomic Mediated Syncope (AMS), Orthostatic Hypotension (OH), Dermotographism and Mast Cell Activation Syndrome (MCAS) on the 7th August 2014.
  2. By the picture, you can see that I am in a neck brace (from May 2015 – May 2016). After having an Upright MRI Scan, I was diagnosed with Craniocervical Instability (disclocation/subluxation of C1-C3), Chiari I Malformation, Syringomyelia and ruptured neck/spinal ligaments. I have undergone a total of 6 major neurosurgeries/brain surgery in the U.S.A. and Cambridge, U.K. since January 2016. I underwent my FIRST critical lifesaving neurosurgery on the 13th January 2016 for Craniocervical Instability, Chiari Decompression, realignment of my skull to my spinal cord, and fusion of my skull-C2; a SECOND critical lifesaving neurosurgery on 17th February 2016 for Tethered Cord Syndrome and fusion of L1-L3; a THIRD critical major neurosurgery on 12th April 2016 for Anterior Corpectomy, Disectomy and fusion of C5-C6; a FOURTH major neurosurgery/brain surgery on 21st June 2016 for insertion of 3 stents into my brain. A FIFTH major brain surgery on 13th April 2017 where I was fitted for a Ventriculoperitoneal Shunt (VP Shunt). Most recently, a SIXTH major brain surgery in Cambridge, U.K. to help restore blood flow to my brain and neck. I am in urgent need of your help to raise £300,000 in order to fund all the lifesaving surgical treatments done in the U.S.A. as there are no EDS specialist neurosurgeons or brain surgeons in the U.K. or Europe.
  3. I am studying MSc Petroleum Geoscience at Imperial College London. I have needed to “pause” my degree for the moment and will resume it once I have recovered from my lifesaving neurosurgery.
  4. I have a twin sister, we are not identical. She’s my rock and we do everything together. I couldn’t have asked for another person to share 24 years of my life with so far!
  5. I also have two golden retriever dogs, Chico (6) and Rusty (3), who are the cutest, most adorable, loving dogs you’ll ever see.
  6. Graduated from the University of Leeds in 2014 with BSc Hons. Geological Sciences, played for the Netball squad (LUUDNC), volunteered for Leeds Raise & Give Society, and loved being apart of uni life!
  7. Music is one of my many passions. I am an alumni singer of the Farnham Youth Choir and had such fantastic opportunities, such as touring and singing in world competitions representing the UK. I have always sung Soprano and my favourite duet I sing with my twin sister is “The Flower Duet” by Delibes.
  8. Another passion of mine is sports, in particular netball, which I have played all my life competitively as a shooter. But since my neck damages, I have really gotten into biking and pilates.
  9. Love travelling around the world and exploring different cultures, being adventurous in the outdoors, hiking mountains, horse riding etc. I have been fortunate enough to travel all over Europe, America, South Africa and India. My expedition to India has been by far the most amazing and humbling experience yet. I had the opportunity to volunteer and teach underprivileged children at a school and care for abandoned children in an orphanage.
  10. Big lover of all things science and arts. My most admired scientist is William Smith who is The Father of English Geology. My favourite contemporary art exhibition I went to last year was Ai WeiWei at The Royal Academy of Arts, London.
  11. Big foodie, although I have to deal with many intolerances due to my hEDS, Dysautonomia and MCAS which includes: gluten, lactose, fructose, yeast and histamines. I have become very experimental with food and recipes- you’ll be able to try some of them out on here.
  12. Meditation and mindfulness – I couldn’t live without! They help me manage my pain, stress, and anxiety. A great way to “neutralise” myself at the beginning and end of each day.
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Horse riding in Moab, Utah. 2015.