Hi,

My name is Holly.

If you could please take a moment to read this message I would be most grateful.

I am currently very poorly and under the care of US Neurosurgeon Dr Fraser Henderson who specialises in craniocervical junction fusions for people with severe forms of Ehlers Danlos Syndrome (a connective tissue disorder caused by faulty collagen genes). EDS is very poorly understood and there are limited treatment options in the UK, especially for complex cases, so I had to fly to America for my care.

MRI and CT imaging have confirmed I have Craniocervical and Atlantoaxial Instability in my neck causing my spinal cord to be abnormally stretched and compressed, leading to cervicomedullary syndrome. You can read a more detailed explanation in the medical reports attached to this fundraiser or by clicking here

The above is causing me to be in huge amounts of pain which I have been living with for 14 years, and is only becoming progressively worse. At its onset I had only musculoskeletal pain, but over the years it has progressed to neuropathic pain in my face, head, eye (effecting vision), left arm and left leg. More recently I have developed weakness/numbness down the left side of my body and neurological tremors (dystonia).

The recommendation is a craniospinal fusion and stabilization from the Occiput (skull) to C2, a bilateral Occipital neurectomy and left C3 neurectomy. In the future further surgery might be necessary to fuse my spine from C2 down, but for now it has been recommended we avoid this.

As you can imagine my current symptoms and the recent findings are quite scary. But I am on my last leg, quite literally, and willing to try anything to avoid the progression of this condition, and to have some relief from the chronic pain.

My quality of life is very poor. I post photos of me smiling, with my friends or family, or in nature, but on the inside I am struggling immensely. Ehlers Danlos Syndrome has frankly robbed me off a normal life.

I am a very resilient person and I will not let this condition break me. I will fight it.

This brings me to you. I need your help!

The National Health Service does not, at present, perform Craniocervical fusions on people with Ehlers Danlos. The UK private sector did perform them until a few years ago, but later stopped.

Currently the NHS are in the midst of conducting a study using upright dynamic MRI imaging to access the presence of craniocervical junction abnormalities in patients with hypermobility spectrum disorder or hEDS (hypermobility Ehlers Danlos Syndrome).

This study could lead to larger surgical trials that would help deliver improved care to highly disabled patients. However, when this study is expected to conclude, and whether it will lead to surgical trials, is unclear. I tried reaching out to the researcher conducting it but sadly had no reply.

​Some years ago, US neurosurgeon Dr Fraser Henderson was invited to the UK to offer his expertise with the potential to assist UK neurosurgeons in a trial study. Sadly, the study didn’t go ahead and concrete reasons as to why this was the case are unknown.

The lack of an NHS treatment pathway, was raised at a recent NHS conference in Liverpool. Neurosurgeons debated how best to analyse MRI scans for Craniocervical Instability, after being presented with the latest research by US neurosurgeon Dr Paolo Bolognese. They agreed that further research and clinical studies were needed in the UK, however concrete plans as to when these would take place were not divulged.

The above has resulted in UK patients having no clear treatment pathway. If conservative measures such as physio and pain relief medication and injections have failed there is nothing else left for us. We inevitably are left in debilitating pain, and forced to go abroad at a huge cost to ourselves and our families. In most cases we are having to resort to fundraisers or borrowing.

This brings me to disclosing my own financial situation as I feel that's only right.

I am currently on sick leave but usually I work part time as an administrator and activities coordinator at the Royal Hospital for Neuro-disability. Over the last year I have had to substantially reduce my hours due to pain and this of course has impacted my salary. Now that I'm on long term sick leave and have exhausted reasonable work place adjustments I will be officially dismissed on the grounds of capability on August 4th. Until that happens my salary has been halved. Unfortunately I don't have any savings.

My own situation aside I feel it right to mention that I have a hugely supportive family. They support me emotionally as I navigate my health problems, and financially with groceries and medical bills. I am currently spending thousands a month on consultations, scans, blood tests, physio, medications, the list goes on. The NHS despite it's best efforts won't cover it all and my health is deteriorating fast.

My Dad recently sold his house and is putting all the sale money towards the operation, travel abroad, accommodation abroad, and post op care. This has put huge financial strain on both him and his partner who we both live with. The op, after care (specialist physio, equipment to help with fusion/bone healing) and travel/accomodation comes to around 150 grand. Even with Dad and extended family contributing every £ they have we are still far short of our target.

I feel tremendous guilt asking my family to spend this kind of money. I wish I could live an independent life where I could provide for myself and live without debilitating pain. I know my family love me and would do anything to help me but I feel this guilt never the less.

For this reason I have decided to start a gofundme. It will help me help my parents, even if only a little.

I would be hugely grateful if any of you reading this could donate. Even £1. It all adds up. If you are not in a position to donate (I know times are tough) then please share my gofundme as widely as you possibly can, and use any contacts you have to help me.

With so much gratitude and love!

Holly xx

P.s I want to add that I appreciate and love the NHS very much. They have cared for me since I was a teen providing me with medications, consultations with various specialists, and pain management programs. I am incredibly grateful for the treatment I have had up to this point. I am also very proud to have worked in the NHS. It is truly a wonderful institution.

Unfortunately though there is limited treatment for EDS and CCI. It took a very long time to get my diagnosis and access appropriate care, and there is still so much more research needed. One day I hope research will lead to improved NICE care guidelines, surgical treatments for advanced cases of CCI, and a better understanding within the medical community and wider society on the complexity of this condition and its comorbid disorders.

LINKS:

The Telegraph very kindly covered my story which you can read here

CCI Fund Advocate and PR expert Sharon Niessen, Daily Express Health editor Lucy Johnston and myself did a piece for the Sunday Express highlighting the systemic barriers to care, and recent Parliamentary progress. You can read our work here.