10 years ago, after battling most of my life with some degree of illness, I received a diagnosis of Ehlers Danlos Syndrome (EDS); a connective tissue disorder due to an abnormality in how the body makes collagen - the supporting ‘glue’ that holds the body together. I was also diagnosed with the very dangerous co-existing condition Mast Cell Disorder that leads to unpredictable life threatening allergic reactions. These can be in response to anything from foods, drugs, emotional and physical stress to bacterial and viral infections.
Until 2017 despite my diagnosis I was a sporty, active person who trained to diploma level in education and worked with children and young adults with special needs. A year ago I was beginning to take the first steps towards setting up a Pilates rehabilitation clinic for other EDS sufferers, whilst also training to be a Riding for Disabled coach to teach children with disabilities to horse-ride.
Five months ago my life changed irreversibly after a seemingly minor trauma - I was diagnosed with Cranial-cervical Instability another rare complication of EDS. This is causing my brain to herniate out of its skull, putting pressure onto my brain and spinal cord causing rapid neurological decline, alongside vertebrae dislocations putting me at severe risk of paralysis and internal decapitation. The stress of this has definitely not helped to lower the rate at which my mast cells are being triggered and causing life-threatening allergic reactions.
Three weeks ago I received the devastating news that my lower spine has now also been affected causing the nerves in my lumbar spine to be compressed, putting huge pressure onto my bladder and bowels, increasing weakness and loss of sensation in my legs.
Left untreated, I will decline further and have been told that this will lead to organ failure and death.
My new normal now involves living with daily limb weakness, fatigue, loss of balance, difficulties eating and swallowing solid foods, nausea, memory loss, confusion, and severe pain, which is unresponsive to even the most aggressive painkillers including morphine. As well as living with the constant worry and threat of severe allergic reactions from my mast cell disorder which to date is proving uncontrollable.
Life as I know it has changed beyond all recognition. I have had to give up all training, volunteering, sport and leisure activities and am reliant on a wheelchair. I would struggle to live independently if it weren’t for the immense support of my local community, family and friends.
There is no NHS help or care currently available to people like me who are suffering with severe EDS and its complications.
Consequently my family and I have spent a considerable amount of money (approx. £100,000) on my treatment and care over recent years but this is no longer possible. I am now unable to cover the cost of the specialist equipment and treatment I urgently need to reduce my risk of paralysis, lessen my rapid decline and preserve the quality of life that I have remaining.
I am asking for your help
I need to urgently raise £26,000 in the next 4 weeks to fund the following:
· Custom made neck brace to prevent, not just some, but all movement in my neck (unlike the one that I was put in in May), to prevent vertebrae dislocation and relieve pressure of my spinal cord
· Custom made back brace to relieve the effects of the lumbar spine nerve compression
· Highly specialised physiotherapy to reduce the risk of muscle loss around vital organs through being immobilised
· Adaptations to my flat necessary to continue independent living as the braces will only allow me to bend from my hips and knees – joints which are already fragile through previous dislocations
· Electric wheelchair to give me back independence in getting around - I am currently reliant on others to push me in a manual chair
· Upright MRI scan to monitor the progression of my condition
· 1 short spell of respite care
As ludicrous as it may sound none of this life-enhancing and life-saving treatment or equipment is available on the NHS or via social services.
I have never fundraised for myself before and it feels awkward to be asking people for financial support. However I am at a loss as to how to halt my physical decline otherwise. I want to extend my life and mobility for as long as possible, to enjoy more precious moments with my family and friends; this fundraiser offers me that chance.
Thank you for reading my story and for any help you feel able to give.
For more detailed information please see:
What is EDS?
What is Cranial-Cervical Instability?
What is Mast Cell Disorder?
Any funds raised above the intial target will be held securely for any additional and unforseen medical and/or respite care costs.