mind, body & EDS

| living with a rare, invisible, genetic disease |


February 2016

“When you hear hoofbeats, think horses, not zebras” – though they may be rare…zebras do exist. Today, Monday 29th February is Rare Disease Day. This is a very special day to me to help promote awareness of the challenges, hopes and needs of those who are living “zebras”.

QUICK UPDATE: Discharged from hosptial

My Second Lifesaving Neurosurgery on Wednesday 17th February went well, even though there were some unexpected additional surgical procedures that were required during the operation to help improve and preserve my quality of life. Unfortunately, I have lost a significant amount of sensory function in my lumbar spine and lower limbs and control of my bladder/bowels. However scary this is for me at the moment, we are hoping these sensory function nerves have not been permanently damaged already (pre-surgery), and that instead it will heal with time – but this is very uncertain. Continue reading “QUICK UPDATE: Discharged from hosptial”

As C.S. Lewis once said,“Hardships often prepare ordinary people for an extraordinary destiny…” Please keep up your positive thoughts, support, donations, messages and prayers for me for my Second Lifesaving Neurosurgery on Wednesday 17th February, only a few days away. To those who are sufferers, I hope to help inspire you to never stop believing in the strength you have! 

Charity Chestwax Fundraiser by Imperial RSM for #CareForLaura Appeal

Imperial RSM (Alex McCormac) will be undergoing a fantastic fundraiser of a “Charity Chestwax” on the day of my Second Critical Lifesaving Neurosurgery, Wednesday 17th February! Continue reading “Charity Chestwax Fundraiser by Imperial RSM for #CareForLaura Appeal”

Cooke’s Cape May Photography #CareForLaura Fundraiser

A dear family friend of ours, John Cooke, lives in Cape May, New Jersey which is one of the country’s oldest vacation destination resorts, rich with history, beautiful Victorian buildings and award-winning Atlantic beach scenes. Continue reading “Cooke’s Cape May Photography #CareForLaura Fundraiser”

Second Critical Lifesaving Neurosurgery Appeal Video

Southampton MedSoc Raises £300 for #CareForLaura Appeal!

My twin sister (Rochelle) is currently attending the University of Southampton studying her first year of Medicine. The university MedSoc (Medicine Society) have been so supportive thus far for my #CareForLaura Appeal. They held an “Open Mic Night” on 9th February Continue reading “Southampton MedSoc Raises £300 for #CareForLaura Appeal!”

A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal

Source: Appeal for critical lifesaving neurosurgery for 23 year old PESGB Member Laura Sylvester

I would like to thank PESGB (Petroleum Exploration Society of Great Britain) for publishing and spreading awareness of my unexpected Second Critical Lifesaving Neurosurgery Fundraising Appeal and my rare genetic disease, Ehlers Danlos Syndrome. Continue reading “A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal”

Everyone, tune in to listen to 96.4 Eagle Radio from 6am (GMT) tomorrow (Monday 8th Feb) for ALL DAY coverage of my “Second Critical Lifesaving Neurosurgery” fundraising appeal interviews! So thankful to Eagle Radio helping spread awareness of my rare genetic disease Ehlers Danlos Syndrome and my fundraising efforts! 


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