Help Emma get better where the NHS can’t help

Emma was a happy, healthy 20 something year old working in the music industry, with a busy work and social life,  when suddenly everything changed. She became severely ill in 2018 and hasn’t recovered. It’s since been figured out that this all stems back to 2014 and living in poor conditions in Hackney.  

Emma fell severely ill the first time round in 2015 after living in a house in Hackney that was covered in black mould in 2014.  She had asked that it was removed and conditions in the flat were improved, but they didn't and the flat remained damp and mouldy. She eventually moved out of the flat after a year, unbeknownst to her the damage it had done to her health. 

In 2014 whilst still living there, she started to experience an onset of symptoms such as acne, anxiety, severe fatigue and sore muscles, but it was put down to stress and overworking by her GP, which was believable at the time due to her work rate. 

In February 2015, she had a severe pelvic and kidney infection which resulted in a catheter being inserted. 2 months later she had an accident in the street where she was tripped, fell and broke her arm, which then resulted in severe nerve trouble that left her unable to move, eat, work or wash. This went on for 4 months, she was passed round the NHS with no answers to eventually be told that the pain she was experiencing was made up. 2 weeks after being discharged, Emma was rushed to A&E with severe abdominal pain and was told she had appendicitis, so she had her appendix out. The surgeons told her she didn’t have appendicitis, her appendix was inflamed but it wasn’t appendicitis so would refer her to a gastro consultant. They never did. And not one doctor questioned why her body just broke so severely in various different ways. She was just called ‘unlucky’. 

All of the above happened within the space of 6 months and Emma never fully recovered. 

She continued to go back to her GP from 2016 onwards with complaints of never ending flu like symptoms, fatigue, brain fog, severe pain throughout her body, but it was always just put down to ‘a virus’. She was also given medication for depression, which she never took, because she knew in her heart she wasn’t depressed, it was more than that.  

Between 2017-2018 Emma was being seen by spinal consultants and having regular physio for the severe nerve pain in her neck, shoulder and arm. She had two nerve stem injections, where a 10cm needle was injected into her neck, whilst awake in a CT scanner, which when performed correctly stem the nerve to stop the pain entirely. These did not work. The next step was surgery to remove a disc in her neck, which she declined. 

In 2018 Emma’s health deteriorated hugely, after a traumatic incident left her bed bound. She was diagnosed with PTSD and thought that symptoms of confusion, memory loss plus all of the ongoing symptoms were attributed to that. After intense counselling, Emma and her therapist started to realise it wasn’t her mind that was broken, but her body. By this point Emma really couldn’t get out of bed, her hair started falling out, her skin developed huge lesions and boils and her stomach was so bloated and painful she couldn’t eat. She was sent for a sigmoidoscopy which came back inconclusive. Still no answers. 

Emma became bed bound, getting cabs to work and going home and sleeping for 12 hours a day and still waking up exhausted and sick. After having no choice but to fully isolate herself, Emma did a lot of research and suspected she had a stealth or underlying infection, or possible Mycotoxin poisoning.  She changed her diet to try and deal with her symptoms and on paper was incredibly healthy, but instead she got worse and by January 2019 Emma was the unhealthiest she had ever been. She was lifeless. 

After no help from her GP after 5 years, she decided to pay to see a functional medicine doctor who specialises in mystery and chronic illness. Not only was this doctor helpful, listened and was empathetic, he also told her that her story was quite common in his clinic. Functional medicine looks at your entire health history, including environmental factors. 

He suspected she had CIRS mycotoxin poisoning, which is where the body has an Chronic Inflammatory Response Syndrome to living in mouldy, damp conditions. Some people’s bodies can cope with such conditions, Emma’s couldn’t and her body stopped processing and getting rid of toxins properly. Her test results came back Positive for Ochratoxin A. This is a type of black mould that can cause CIRS for this type of biotoxin and leads to kidney failure, Parkinsons and Alzheimer's if not treated. 

An ‘ok’ amount before you start to get sick is 4. Emma has 36.5 in her system. Her liver and kidneys had stopped being able to get rid of the poison in her body, which in turn was making her extremely unwell. All of Emma’s health problems since 2014 have been a result of this. 

Her continuing symptoms include - chronic flu like symptoms, chronic nerve, joint & muscular pain, gut & digestive issues, headaches, memory loss, insomnia, severe exhaustion, anxiety, acne, skin rashes & lesions, thinning hair, polyuria, dehydration, facial swelling, brain fog and confusion. 

The doctor is also testing her for chronic Lyme disease which can be quite common alongside mycotoxin poisoning due to the fact your immune system cannot fight the bacteria created by Lyme and it’s co-infections, such as Bartonella and the Eppstein Barr Virus, which is the virus that causes Glandular Fever. 

Emma exhausted NHS treatment, she went back time and time again, with no answers, help or empathy. She was dismissed as her symptoms being ‘in her head’. Her GP once said to her ‘what are you in here for now’ and all this time Emma has been extremely unwell. She is now at a point where her day to day life is abnormal, she isn’t able to live a normal life and balancing work and resting to get better is becoming difficult. 

Emma’s treatment is not available on the NHS, due to their lack of understanding of autoimmune and chronic illness. There is a huge lack of research in the UK into Mycotoxin poisoning, CIRS and mould illness. In the USA there is tonnes of research and doctors who are specialists in this field, so there are treatment facilities specifically for this illness. In the UK, this just isn't the case. 

Western medicine is inclined to only treat symptoms, not the root cause of illness, which means patients  can live with an undiagnosed serious illness for years. Due to these factors, Emma has to pay for her treatment out of her own pocket. This is delaying her treatment and testing because she cannot afford to do everything in one go. 

**UPDATE**

Thank you SO much to everyone who has been so amazing and donated what they have - the word OVERWHELMED just doesn’t suffice!

Thank you also to every one who sent beautiful messages of support or shared Emma’s story. We really didn’t expect to reach the initial target so quickly.

This target was to contribute towards some basic but expensive treatment for Emma over the next 6 months in London. Emma has since found out that her condition will take about a year to recover from. 

Since sharing Emma's story, so many people gave us life changing advice and Emma has been in touch with a specialist in this area, who has recommended a treatment centre in California on the US/Mexico border that treat people specifically with this condition intensively for 2  weeks. She is in touch with the centre to discuss next steps. 

It is the ideal place for Emma to be to receive the best care she can get at this stage and to just give her her life and mental strength back as soon as possible.

Therefore, because of this, we've decided to be bold enough to change the amount we are raising to £25,000 to cover all costs of the clinic, travel, accommodation and ongoing treatment, both physically and emotionally once she arrives back in the UK. Emma is no longer able to work for the moment, so the money raised will also support this time off needed to recover.

Emma's treatment is complex and will take time. There is no quick fix. Below are the steps that we are taking to ensuring Emma is supported properly and can finally heal. 

Step 1 - Detox. This is where Emma needs specialist support and care as this is the most intense part of recovery. She needs to remove the poison from her system as soon as possible. 

Step 2 - Stem Cell Rejuvenation.  Cell membranes are damaged during CIRS and the poison attacks the cell membranes, so therefore these need replacing. 

Step 3 - Rebuilding Emma's immune system and maintenance. She will need continued emotional and physical support. 

Thank you all for your kindness, love and generosity, it means the world to us and I pray You all are blessed 10 fold for what you have done!

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