Charlie's story written (before spinal fusion update forthcoming):

 

 

"Four years ago, whilst studying for my Masters degree in Comparative Literature I became severely ill with multisystem symptoms which puzzled most medical professionals. After years of investigations both through the NHS and through self-funded private appointments, I was diagnosed in February 2018 with Hypermobile Ehlers-Danlos Syndrome and many comorbid conditions and complications. In addition to EDS since 2015 I have been diagnosed with Postural Orthostatic Tachycardia Syndrome, Endometriosis, Gastroparesis and Factor V Leiden deficiency which has caused me to have a Pulmonary Embolism.

 

I have since developed Craniocervical Instability and atlantoaxial instability which has caused brainstem compression. Left untreated this will cause paralysis or may be fatal. Symptoms range from severe neurological problems such as aphasia, memory, speech and movement problems, CSF leaks and occipital neuralgia to the inability to walk or be upright for any length of time due to severe pain. In the last year my health has deteriorated dramatically, I now have full time care from my partner, I rarely leave my home and when I do, I use an electric wheelchair.

 

In severe cases like mine, in which physiotherapy has not been beneficial the international Ehlers-Danlos Community recognises that surgical intervention is necessary. Spinal fusions are performed routinely in the United States for this complication with excellent success rates; improving quality of life and life expectancy. However, this life-saving and life-changing operation is not yet offered on the NHS for patients with EDS. This is why we need your help. We have been directed to Dr Gilete a neurosurgeon in Barcelona through the charity EDS UK. Dr Gilete specialises in Craniocervical Instability in individuals with EDS. He has excellent success rates and in recent years has treated many patients from the UK.

 

My family and I are visiting Dr Gilete on January 21st 2019 to make a surgical plan, it is at this time we will learn how much we will need to raise and how long we will have to raise it. We know that the minimum cost for medical expenses is £60,000. At current we are energetically raising awareness and funds through various events and social media campaigns including a JustGiving page.

 

If I am able to fund this surgery and get my life back, I plan to use my experiences to help future patients. Myself and a group of patients I am in contact with, some of whom have had the surgeries, others who are awaiting theirs are working together to collect our experiences and show the value of these life-changing surgical interventions by raising awareness and campaigning to change the situation in the UK."  

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