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<div>Help Me Access Specialist Care
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<div>In a nutshell:
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<div>My name is Astrid and for over 10 years I have been living with complex chronic illness, including Hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), POTS and many comorbidities.
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<div>Despite spending over £10,000 of my own money on private healthcare exhausting my savings, pursuing NHS referrals, making complaints and advocating tirelessly for myself, my health continues to deteriorate.
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<div>I now experience regular anaphylaxis symptoms, frequent hospital visits and severe food and environmental sensitivities with increasing disability. I am raising funds to access specialist immunology, MCAS and hEDS related care that is simply not available to me locally through the NHS.
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<div>Any donation or share would mean more than I can put into words.
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<div>⸻
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<div>My Story
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<div>Hi, my name is Astrid.
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<div>For those who know me, you’ll know I’ve been fighting a battle with chronic illness for well over 10 years. What started with glandular fever and years of being told my symptoms were anxiety eventually led to diagnoses of Hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), POTS, endometriosis, asthma and a growing list of related complications.
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<div>Whilst finally receiving diagnoses brought some relief it quickly became apparent that getting answers and getting treatment are two very different things.
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<div>Over the years I have exhausted my savings and gone into medical debt accessing private consultations, investigations, medications and treatments. I’ve spent over £10,000 trying to get answers and access care, whilst also pursuing every avenue available to me through the NHS. I’ve made complaints, chased referrals, contacted charities, spoken to MPs and advocated relentlessly for myself in an attempt to access the support I need.
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<div>Unfortunately despite all of this, my health continues to deteriorate.
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<div>There have been periods where I have been largely bedbound, periods where I became severely malnourished due to the extent of my food reactions, and periods where I lost a significant amount of weight because my body could no longer tolerate enough foods to meet its nutritional needs.
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<div>I’ve always tried to keep going, I’ve adapted &amp; found workarounds and continued showing up wherever I could but increasingly that has come at the cost of so many other parts of my life.
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<div>My world has become much smaller, simple things that most people don’t think twice about, like eating out, travelling, attending events or spending time in busy public spaces, now require careful planning and risk assessment. My environmental sensitivities have become so severe that I often wear a mask in public spaces because fragrances, chemicals and airborne triggers can cause significant reactions and even moved out into the countryside to prevent reactions.
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<div>MCAS is an incredibly unpredictable condition. Foods, environmental exposures, fragrances, chemicals and things that were previously safe can suddenly &amp; quickly become unsafe , making it incredibly difficult to prevent or manage reactions.
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<div>I now experience regular weekly anaphylaxis symptoms and frequent hospital visits, and recently required both A&amp;E treatment and admission to a hospital ward. I am often stuck in a cycle of crisis management, becoming unwell, receiving emergency treatment, stabilising temporarily and then returning home without access to the specialist support needed to prevent it from happening again.
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<div>The reality is that the NHS simply does not currently have the resources to provide the level of specialist care that I need. In many cases healthcare professionals have never heard of my conditions, let alone know how to investigate or treat them appropriately. There are no specialist services in my area able to provide the expertise required to manage the complexity of my case, and many of the investigations I now need are only accessible privately.
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<div>Alongside severe MCAS, I am also undergoing investigations into cranio-cervical instability and a possible spinal fluid leak, both of which can cause significant neurological symptoms and disability. I need specialist review of my imaging and access to clinicians with expertise in these areas, something that currently requires private funding.
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<div>The funds raised will go towards specialist immunology consultations, MCAS investigations and treatment recommendations, specialist reviews of imaging, hEDS-related investigations and the healthcare costs associated with accessing this level of specialist support.
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<div>My hope isn’t a miracle cure, my hope is to find enough stability that I can participate in life again, to work more consistently, spend time with people I love, leave the house without constantly calculating risk, improve my nutrition, reduce emergency hospital visits and stop living in survival mode.
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<div>This is an incredibly vulnerable thing for me to write because anyone who knows me knows that asking for help does not come naturally. I’ve spent years trying to carry this largely on my own and doing everything possible to manage it myself, but I have reached a point where I simply cannot continue doing this alone.
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<div>I know we’re living through financially difficult times and I completely understand that not everyone is in a position to donate. If you are able to contribute, no matter how small the amount, I would be deeply grateful. If donating isn’t possible, simply reading this or sharing it with others would mean just as much.
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<div>Whether you’ve donated, shared, or simply taken the time to read my story, thank you from the bottom of my heart. Your support, kindness and encouragement mean more than I can put into words.
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<div>With love and gratitude,
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<div>Astrid
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Help Me Access Specialist Care

<div>I will be climbing Mount Tauhara every day for 15 days, which will be the equivalent elevation of Mount Everest, at 8848 meters high. I will be hiking from the 18th August to 1st September. 
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<div>The hike is a very steep incline and challenging terrain, it will take me 2.5 hours to return each day. At the top there are stunning vistas of Mount Tongariro and Mount Ruapehu which are currently covered in snow, given that it is winter here in New Zealand. I will mostly be walking early in the mornings (cold and frosty!) but some days I will do it after I finish work which will be a late afternoon sunset hike (cold and dark!).
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<div>I am undertaking this challenge to raise money for my dear friend Holly, who has very recently undergone urgent craniocervical surgery, which is a fusion of her skull and neck. This is due to Holly's Ehlers Danlos Syndrome which is a connective tissue disorder caused by faulty collagen genes. I’ve known Holly for 16 years and throughout she has lived with and struggled with severe chronic nerve pain caused by her conditions which have intensely increased over recent years to the point where life had become extremely challenging and at times unbearable for her.
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<div>Over the 16 years of our friendship we have experienced a lot together and I love her dearly. It has been so sad and painful to see her in such agony over the years. And especially now, while I am so far away in New Zealand, I wanted to do my part to support her and fundraise towards her operation.
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<div>Neither the NHS nor private sector in the UK perform these fusion operations currently, so after much consultation within the UK, Spain and the US, Holly decided to go ahead to America to have her operation, which of course came at a huge cost, around £150k. Holly had her operation very recently and thankfully it did go very well and it has drastically decreased the amount of pain she is in. She is still in the US recovering and will have to travel there again in November for further check ups. Holly has her own fundraising page (linked here) if you want to have a look at her more detailed story or donate directly there. Holly also recently had the Telegraph newspaper share her story which you can read here.
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<div>I have set up this fundraiser to ask my friends and loved ones to support me in my physical challenge to hike to raise funds for Holly. If you feel able, please do donate below, or if not, please share with your friends and family to support Holly.
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<div>I think I am going to find this daily hike a challenge, as I am also working every day in the meantime so I will be fitting it around that. I know it will take a physical toll on my body but it is something I want to do and know that I can do. I really appreciate everyone taking the time to read this, and sharing my journey. I will be documenting my journey as I go and sharing here.
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<div>Thank you so much!
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<div>Indi
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Support Indi's hike for Holly's Operation

<p>I HAVE NOW HAD SURGERY. I AM KEEPING THE FUNDRAISER LIVE IN HOPE OF REIMBUSING MY AMAZING FAMILY.  THANK YOU FOR ALL YOUR GENEROUS SUPPORT! 
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<p>Hi, my name is Holly. 
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<p>If you could please take a moment to read this message I would be most grateful. 
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<p>I am currently very poorly and under the care of US Neurosurgeon Dr Fraser Henderson who specialises in craniocervical junction fusions for people with 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. 
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<p>MRI and CT imaging have confirmed I have Craniocervical and Atlantoaxial Instability in my neck causing my spinal cord to be abnormally stretched leading to cervicomedullary syndrome. 
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<p>I have been in a huge amount of pain for 14 years, and it 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.
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<p>The recommendation is a occipitocervical fusion from the occiput (skull) to C2, a bilateral occipital neurectomy and left C3 neurectomy for occipital neuralgia. 
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<p>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. 
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<p>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 and specifically CCI/AAI has frankly robbed me off a normal life. 
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<p>I am a very resilient person and I will not let this condition break me. I will fight it. 
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<p>This brings me to you. I need your help! 
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<p>The National Health Service does not, at present, perform Craniocervical fusions on people with Ehlers Danlos. 
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<p>The above has resulted in UK patients having no treatment pathway. If conservative measures such as physio and pain relief medication/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. 
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<p>This brings me to disclosing my own financial situation as I feel that's only right. 
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<p>I am currently on sick leave but usually I work part time as an administrator and activities coordinator at a hospital. 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. 
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<p>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. 
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<p>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 100k. Even with Dad and extended family contributing every £ they have we are still far short of our target. 
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<p>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. 
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<p>For this reason I have decided to start a gofundme. It will help me help my parents, even if only a little. 
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<p>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. 
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<p>With so much gratitude and love! 
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<p>Holly xx 
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<p>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. 
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<p>Unfortunately though there is no surgical treatment for EDS/CCI patients. 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 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. 
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Help Holly get her head screwed on

Holly McConnell

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PYMK has donors

Holly McConnell

Holly McConnell

What they care about

Featured causes

Help Me Access Specialist Care

Support Indi's hike for Holly's Operation

Help Holly get her head screwed on

About me