Help Me Access Specialist Care

In a nutshell:

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.

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.

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.

Any donation or share would mean more than I can put into words.

⸻

My Story

Hi, my name is Astrid.

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.

Whilst finally receiving diagnoses brought some relief it quickly became apparent that getting answers and getting treatment are two very different things.

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.

Unfortunately despite all of this, my health continues to deteriorate.

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.

I’ve always tried to keep going, I’ve adapted & 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.

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.

MCAS is an incredibly unpredictable condition. Foods, environmental exposures, fragrances, chemicals and things that were previously safe can suddenly & quickly become unsafe , making it incredibly difficult to prevent or manage reactions.

I now experience regular weekly anaphylaxis symptoms and frequent hospital visits, and recently required both A&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.

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.

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.

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.

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.

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.

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.

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.

With love and gratitude,

Astrid