<div>I’m Laura, a mother of three beautiful young children (Eliza, Leo and Emilia) but I’m also battling a rare neurological disorder named CRPS (Complex Regional Pain Syndrome) and a very rare tumour known as a Desmoid Fibromatosis. In every million people, around 5-6 could be expected to develop a desmoid sarcoma. My whole story is long and complex, should you wish, you can read about it here:
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<div><a href="https://poisonedbyprescription.substack.com" target="_blank" rel="noreferrer noopener">poisonedbyprescription.substack.com</a>
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<div>The photo above was taken just before this all began 3 years ago.
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<div>Originally I began my fundraiser to solely fund my CRPS recovery but the tumour has grown substantially in recent months since diagnosis and now requires my urgent attention given its proximity to major structures in the neck. There has been a great deal of personal introspection as to changing the focus of the fundraiser to reflect my current circumstances, but I am asking if, wherever possible, you could share this again to help me garner more support. I have seen that just one share can make an immeasurable incredible difference in the donations.
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<div>The tumour appeared following the loss of our son (fourth child) at 28 weeks pregnant in 2023. Whilst it remained stable in size for some time, in the last 4 months it has doubled in size. Although this type of sarcoma cannot spread throughout the body, it has the potential to cause very serious issues should it continue to grow at its current speed. I recently wrote an update detailing my lack of traditional treatment options. In a nutshell, I have to attempt to reduce this myself with researched alternative therapies given the doctors now no longer remove these particular tumours as studies show they predominately return more aggressively. After lengthy discussions with the oncologists, they agreed they cannot use chemotherapy and radiotherapy on me given my metabolic issue with medication (DNA testing explained below). You can see the size of the tumour in the photo below.
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/78280787_1730198642378100_r.jpeg" width="100%" />
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<div>This book has been invaluable in helping me work out how to address the tumour in an attempt to heal:
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<div><a href="https://amzn.eu/d/feQW9Du" target="_blank" rel="noreferrer noopener">Decoding Your Body’s Messages</a>
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<div>It is enlightening on many levels. It has an a-z of most conditions/ailments you could imagine and this is what it states under the section on Fibroid Tumours:
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<div><em>The emotions behind fibroid tumours are grief and guilt. It can often be about the desire to have children or pregnancies that didn’t go full term, although it can also be about unprocessed grief from family members passing.</em>
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<div>It seems impossible to not draw a direct link here given what had happened in my life prior to its emergence. It has given me a whole new perspective on the biology of our bodies in the context of how emotions instil symptoms in the context of our subconscious minds (which controls 95% of our lives, in comparison to just 5% that stems from our conscious minds).
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<div>If this is an area that interests you, the following podcast is a fascinating watch:
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<div><a href="https://drhyman.com/blogs/content/podcast-ep755/" target="_blank" rel="noreferrer noopener">How Our Beliefs And Thoughts Impact Our Biology</a>
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<div>You will struggle to perceive illness and disease in the same way after you have watched it.
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<div>The CRPS began following a nerve injury sustained during orthopaedic surgery. The literature will tell you there is NO CURE, it is a progressive condition and that at best you can hope to manage some of the pain with a battery of medication. I now know this is not true with the right intervention (which the NHS does not support). I am someone who cannot take the drugs they offer for pain that statistically have little efficacy anyway. My DNA dictates that I cannot be given many types of medicines, we had Pharmacogenetics testing done, but confirmation that I had previously, and would indeed suffer a range of severe side effects, some life threatening.
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<div>CRPS is classed as the most painful chronic pain condition that is known. It reaches 42 out of 50 on the McGill Pain Scale, higher than non-terminal cancer, childbirth and amputation of a finger without anaesthesia… and the pain is constant. It feels like there are tiny daggers in my hand, I have electrical shocks, muscle cramping, deep bone pain, a burning and stinging sensation. However, it must not be overlooked just how far I have come since the start of my fundraiser, the pain level itself is hugely reduced due to the therapies I have undertaken so far from your incredible support. However, despite my best efforts to avoid this, in 10 months I have lost large amounts of small hand muscles, some of my fingers have clawed, my shoulder is frozen and my hand still cannot tolerate cold. This was my hand after 10 seconds in water at the beginning of my journey:
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<div>It now no longer swells which is immense progress but you can see here the muscle wasting and clawed fingers.
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<div>For those wanting to understand CRPS in more detail, a longer explanation is provided below but the harsh reality is that my central and automatic nervous systems have been malfunctioning to a significant degree. Rectifying that is uncharted territory for many medical professionals who do not understand the causation and dictates the line that there is ‘no cure’. What I now know from my own extensive research is that these malfunctions must be addressed through a range of modalities (not offered by the NHS).
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<div>I have suffered a range of misdiagnoses over two years, let down beyond recognition by not one but multiple health professionals, this has led to this point. Thinking positive and trusting my body to recover in time is not the solution. The few stories I can find of people who have defeated CRPS, have used an aggressive regime and an extensive amount of alternative health modalities in conjunction. Those very people have spent thousands upon thousands in the process. As a family we have suffered financially on an immeasurable scale for two years trying to rectify the damage of medical gaslighting.
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<div>At the heart of this story are three little human beings, desperate to get me back in full health. Some of the small basic things you take for granted have become impossibly hard now, the pain has an overbearing effect at times, trying to be a ‘mum’ and all that comes with it is incredibly hard with one hand (in full use) alone. I miss the ‘old pain free’ me more than I can possibly quantify and I will do everything in my power and stop at nothing to regain my health and the strength I once I had.
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<div>Healing has no timeline and it is not a linear process. Whilst I do not know how long my recovery will take, any support you can offer directly or through helping me share my story will aid in ensuring I have every possible chance of a full recovery. Any gesture, no matter how small will make a huge difference. The treatments outlined below are the product of my own endless research backed by clinical evidence and CRPS and Desmoid Tumour success case studies.
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<div>Hyperbaric oxygen therapy (HBOT)
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<div>Acupuncture
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<div>Craniosacral therapy
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<div>Hydrotherapy
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<div>Chiropractic/osteopathy
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<div>Bowen technique
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<div>Infrared light therapy
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<div>NAET treatment
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<div>Emotional Freedom Technique (EFT)
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<div>Trauma therapy (through hypnosis) to treat the emotional root cause of the tumour through the subconscious mind
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<div>Any donations towards my target will enable me to continue my journey. Please, please do share this amongst your networks if you can, if only to raise awareness of debilitating conditions that rob many of ‘living’ their lives. Many cursed with these diagnoses, lose hope. I will not accept this is my future but I need funds to fight this head on, and when I defeat this, I will fight for those that cannot.
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<div>Following your incredible support, I am successfully battling CRPS and I have been able to get to a point where I am now retraining in two types of trauma therapy which I have received myself to help address nervous system dysregulation. I will go on to help many others recover from a range of health complaints once I have been able to make big enough strides with my own recovery.
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<div>If you are interested to learn more about CRPS and how it affects people, there is a Netflix documentary called 'Take Care of Maya'. It is a heartbreaking account that I encourage everyone to watch to educate people on this cruel condition.
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<div><a href="https://www.netflix.com/gb/title/81349305" target="_blank" rel="noreferrer noopener">Documentary link</a>
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<div>What is CRPS:
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<div>We have many nervous systems in the body. The central nervous system controls the body and its functions. The motor nervous system controls movements. The sensory nervous system controls things I see, smell, taste, and feel. So what does the sympathetic nervous system do? It is the system that activates when you are scared or stressed. For instance, when you are walking in the dark and you think someone is following you and you get worried or scared the sympathetic nervous system turns on. It responds by diverting blood flow from the limbs to send the blood to the heart, lungs, and brain so you can think fast, move fast, get to safety. When the crisis is over it shuts off until it is needed again. With CRPS the damaged sympathetic nerve and nervous system remains on. It does NOT shut off, firing pain around the clock along with many other disabling symptoms. My parasympathetic (rest and relax) nervous system is not activating as it should meaning my body remains in a heightened state. All the treatments I would seek look to gently aid this component and address the imbalance.
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<div>What is a Desmoid Tumour:
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<div>This description is taken from the Sarcoma UK site. Desmoid-type fibromatosis (DF) is a rare type of soft tissue tumour. It is also referred to as a Desmoid tumour, or aggressive fibromatodis.
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<div>Patients are treated by sarcoma specialist oncologists. DF is what is called an intermediate tumour. Intermediate tumours sit somewhere between non-cancerous and cancerous tumours. These types of tumours have the capacity to come back at or near the original tumour, but they do not spread.
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<div>DF is rare. In every million people, around 5-6 could be expected to develop DF.
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<div>Thank you from the bottom of our hearts,
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<div>Laura &amp; family
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