Help Holly get her head screwed on
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). Given the rarity of my condition and limited resources within the UK for treatment I had to fly to America for surgery.
MRI and CT imaging have confirmed I have Craniocervical and Atlantoaxial Instability in my neck causing my spinal cord to be abnormally stretched and brain stem compressed, resulting in cervicomedullary syndrome. You can read a more detailed explanation in the medical reports attached to this fundraiser.
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 and UK private sector sadly no longer perform fusions on people with Ehlers Danlos.
This is due to:
1. A lack of Neurosurgeons who specialise in EDS and it's comorbidities, with the expertise to diagnose CCI and perform successful fusions. My UK Neurosurgeon was able to direct me to a US specialist but not diagnose or operate on me.
2. Disagreement within the medical community on the best line of treatment. In America and Spain craniocervical fusions are recommended and available for severe cases of CCI when all conservative measures have failed. In the UK they were available until a few years ago but in recent years were stopped.
A research study looking at fusion effectiveness in EDS patients, involving US and UK Neurosurgeons and Rheumatologists was due to go ahead but for some reason it was paused. It is unclear if this was due to funding, the pandemic, a dispute amongst Neurosurgeons over CCI measurement criteria, or for another reason.
When and if it will resume is unknown. Link to study here:
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 loves 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 be clear that I appreciate and love the NHS. 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 organisation. Unfortunately though there is limited treatment for rare and misunderstood conditions. 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.
Organizer
