Help Trish access pioneering treatment

Hi, I'm Jess and I'm fundraising to help my little sister Trish get her life back.

 

Trish has ME/CFS, fibromyalgia, spinal cord compression and paraproteins, causing debilitating pain and damage throughout her body, rendering her severely disabled. Trisha’s condition is worsening and she now struggles to perform some of the most basic functions, like eating and digesting food. We have launched this fundraiser to help raise funds for further diagnostics, access pioneering medical treatment, and raise awareness of her journey to a diagnosis and treatment so others, too, can find hope for a future. 

Background

In June 2014, Trish had a period of illness, including inexplicable fatigue, sensitivity to light, and GI symptoms. As part of a screen for Coeliac Disease, the lab detected an IgG kappa paraprotein. Abnormal maturation of cells and proteins in the bone marrow can result in the circulation of paraproteins in the blood. Paraproteins are generally found in patients over 60 with a haematological disorder called Myeloma. Trish was only 24 when this was detected, which was a red flag for the lab, so she was referred to a Consultant Haematologist.

By September, Trish was also beginning to suffer with neurological symptoms, such as muscle spasms, twitching, shooting and stabbing pains, numbness, collapsing, loss of consciousness when reaching for things, and widespread cramping. She lost the full use of her hands, which she relied upon for her career as a Clinical Sports Therapist.  In the six months that followed, she lost the full use of her body and became mostly housebound for about 9 months while she learned to apply her skillset to fire up her own nerves to regain muscle function.

Over the next few years, Trish underwent a succession of investigations, including PET-CT, MRI, X-rays, bone marrow aspirates, regular blood tests (3 monthly), EMGs and more at the request of Haematology, Immunology, Rheumatology and Neurology. Unable to explain the cause of her paraproteinemia or neurological symptoms, she was diagnosed with MGUS (monoclonal gammopathy of undetermined significance), Fibromyalgia, and Chronic Fatigue Syndrome (a.k.a. ME/CFS). 

Initially told to treat the ME/CFS diagnosis as "an umbrella diagnosis" while they refer her to a Pain Clinic to treat the now widespread spasms, fasciculations and cramping, Trish didn't give the diagnosis much thought. She was a Clinical Sports Therapist, a multisports coach and the U.K.’s top female fundraiser for a charity company she worked for, but she was having to gradually adjust her hours as her condition worsened. When she lost the use of her hands, she had to close her clinic and adopt a more flexible role as a multi-sports coach working with schools across Bristol and South Gloucestershire. When she was able to, she worked ad hoc in an elite multidisciplinary clinic in the South West. She wholeheartedly adored fixing people, and working with kids.

Trisha’s haematology investigations went on for 4.5 years. The first 6 months of this consisted of 26 back-to-back hospital investigations. It took her 2 years to recondition her hands to regain the capacity to perform treatments again. 

Unfortunately, she didn't know that ME/CFS can be progressive. She didn't know that overexertion leads to Post Exertional Malaise (PEM), which would leave her bed-ridden for days, then weeks. She didn't know that ME/CFS is a multi-systemic inflammatory condition, involving mitochondrial dysfunction. It's not just her body that's tired, it's every cell in her body. 

Trisha’s GPs and The Pain Clinic prescribed several different drugs, each of which had adverse effects, from incontinence to slurred and loss of speech for 1.5 years, fried neural circuits, inability to complete simple tasks, and cognitive impairment; symptoms which still present today. Accepting that she could no longer work was incredibly difficult for Trish.

Years of failure to access effective treatments, rapidly progressing disability, loss of income and seemingly endless adversities led to the eventual break down of her relationship in 2019. She became homeless in her severely disabled state and moved in with Jon and I while our son was 5 months old. This is when I finally witnessed, firsthand, what this disease was doing to my sister. She had drenching fevers on a daily basis. We'd have to alternate mattresses and bedding so that one set was always dry for her to use. Some days she couldn't make it down the stairs, so it was lucky I was at home on maternity leave to prepare meals and take them to her in bed. I saw her entire ribcage seize like an accordion on one side one day, but the untreatable pain broke my heart. 

It was devastating to see her this helpless. This was the girl who travelled the world and climbed coconut trees in a bikini! The girl who  ended up in some very precarious situations because of her sense of adventure. The girl who made friends with the locals in Cambodia and vowed to help them have a future to look forward to after hearing their plight. Trish had massive dreams, dreams which were already in motion when this disease struck her. She had set up her clinic in Bristol and was negotiating terms for clinics around the UK and abroad. She had plans for buying land in our Mum's homeland of Fiji for farming and ecotourism, to eventually raise the funds to open a resort in Cambodia to give her friends there hope. 

These are still her dreams. She may still be able to see them come true, with your help. 

Trish has struggled to access an effective treatment for her paraproteinemia. An Immunology colleague suspected that her body is making paraproteins secondary to an initial viral infection and that her body is in a state of chronic inflammation, resulting in ME/CFS symptoms and paraproteins. 

Trish has been fighting ongoing infections for 17 weeks, struggles to ingest food properly (a recent endoscopy highlighted paralysis in her oesophagus and a motility disorder, which explains why she has had to fire up her muscles to chew and swallow and manually move the food through her body since 2015).

She is now awaiting further investigations and nutritional management under the gastroenterology team.

Medical Gaslighting

Despite paraproteinemia being diagnosed in 2014, and Haematology and Immunology suspecting polyneuropathy and referring her to Neurology for a diagnosis for which they could treat, Trish was subjected to medical gaslighting by the Consultant Neurologist for 8 years, rapidly deteriorating under his care.

In 2019, Trish was admitted by Infectious Diseases for her unexplained drenching fevers; however, whist an inpatient, Neurology queried “dillusional” and sent a Psychiatrist to assess her. The Psychiatrist completely dismissed any suggestions of anxiety, depression, or any other mental illness, citing that, because of her experience as a Sports Therapist, she fully understood her condition and was reacting entirely appropriately for someone in her circumstances. Infectious Diseases discharged Trish, referring her back  to Neurology for further investigations.

Despite having symptoms indicating spinal stenosis, the Neurologist blamed her for her deterioration, suggesting she was deconditioning because she had accepted her disability, and that she was limiting her own chances of recovery.

Trish dropped from a size 14 to a size 4 by not being able to mobilise around her own home for over 6-months when she lost the full use of the lower body. Due to feeding, ingestion and nutrient absorption issues, Trish has failed to regain this weight since.

Despite there being effective treatments for Trisha’s condition, she was offered palliative care in September 2019, aged 28.

Desperate for answers, we sought the advice of a private  ME/CFS specialist, who suspected Trish may have a structural cervical spine (neck) issue, where restricted blood flow to the brain could be resulting in excessive sensation of pain. He agreed that  paraproteinemic neuropathy was indicated, and that she had symptoms of chronic infection, possibly from a past EBV infection. He suspected she may be suffering ongoing hypothalamic strokes due to restricted cerebral blood flow and certain postures impacting this (such as turning her head). He referred her back to Neurology for a cervical angiogram, querying Bow Hunter’s Syndrome.

Her Neurologist dismissed the referral for imaging, stating that he did not need to rule out an organic disorder in order to diagnose a functional one, before diagnosing a psychogenic illness. He rediagnosed her with Functional Neurological Disorder, saying it was a disconnect between the mind and the body, and she required Neuropsychiatry. 

We knew this was not a possibility. There is no way your mind can will your body to spasm, seize, cramp and cause shooting pains the way her body was. We explained to the Neuropsychiatrist that we needed to exclude any organic cause for her condition before we accepted a psychiatric diagnosis, which he understood. 

Trisha’s experience of healthcare thus far was demoralising and dehumanising. There were repeated failures to meet her basic needs. Pursuing a myeloma investigation only served to persistently block her ability to access emergency services. Thanks to endless inconsistencies in her GP care, new GPs would be put off by her medical file, not understanding all of the investigations ordered by the hospital consultants while had been a case study.

We had to go private to access the neuroimaging the ME/CFS specialist ordered that neurology had blocked access to.

Trisha's health is very much critical. Until her nutritional needs are supported by the Gastroenterology team, she is struggling to maintain any immunity through her diet as she is barely able to eat. This is why we are launching this crowdfunder.

Looking to the Future

After being passed from pillar to post in the NHS, our Dad kindly offered to pay for her to see a private ME/CFS specialist. The ME/CFS specialist suspected she may have hypermobility in her cervical spine (neck), resulting in Craniocervical instability (CCI), which may be affecting blood flow to the brain,  causing the neurological symptoms she finds so debilitating. The doctor referred her to a Rheumatology & Hypermobility consultant in London, who ordered an array of tests, including a functional MRI (taken while the patient is moving their joints), bone density scans, X-rays and blood tests. The Hypermobility specialist diagnosed her with Neural Foraminal Stenosis (pinching of the spinal nerves) from the upright MRI imaging, and referred her to a Neurosurgery consultant. 

The Neurosurgery consultant needs updated imaging, including her whole spine (not just her neck), before he can come to a decision on whether or not to operate. Trish potentially needs to have neurosurgery to widen the areas in the vertebrae that are pinching her spinal cord to relieve her pain and symptoms. He believes her structural degeneration may be due to polyneuropathy. Left untreated, this could be what has caused her nerve damage, gastroparalysis and structural degeneration to date.

We are so close to getting answers after 8 years of suffering. Our Dad has been so generous and helpful in getting her this far, but we now need to fundraise for this additional imaging and follow-up appointment.  

Furthermore, Trisha's ME/CFS specialist thinks that she may have paraproteinemic neuropathy, i.e. that her paraproteins are causing damage to her nerves and tissues. Trish has been offered a space on a clinical trial in Europe offering HELP Apheresis, with her space on the trial fully funded by an anonymous donor (thank you, whoever you are and thank you to all of the team at Help 4 Apheresis Association for finding her the donor)! The funding covers the Help Apheresis treatment, however there are additional costs which we need to raise so she can get out there. These include:

- Flights
- Accommodation for 8 weeks 
- Carer
- Co-treatments 

Apheresis is a process by which a patient's blood is removed and, effectively, filtered. This removes antibodies, antigens and inflammatory markers which may be causing and exacerbating many of her ME/CFS and neurological symptoms. This gives the body time to repair itself and reduces the inflammatory processes continuously going on, which lead to more inflammation, more damage, etc. 

Trish will be one of the first ME/CFS patients accessing this treatment as it's currently being trialled on long covid patients, with more post viral fatigue syndrome cohorts trials commencing next year. Due to her clinical urgency,  with the generous support from a complete stranger , and with a trial being endorsed by her private specialist, she is able to access the treatment she has needed this entire time.

This is no short of a miracle! 

She has also found a multidisciplinary team of massage therapists who can manage her physical condition to try and maintain the function that she has regained. It currently takes Trish 18 hours of soft tissue therapy on herself each day. She has done amazingly well to keep herself going so far in the hope that she would find some answers and an accessible treatment, however her hands are degenerating and she needs this extra support. 

With your help, we can find out if she is a candidate for neurosurgery to help alleviate her pain and suffering. We can send her to Europe for this pioneering treatment that could repair some of the years worth of damage that has been done to her body. She can continue to dream and make those dreams a reality. She can get back to what she does best: teaching and healing others. She can be a mum, which has been a lifelong dream of hers. Trish has lost many years since she was 24- but at 33 - her life should been nowhere near over.

Please help give her the chance that she deserves. Trisha will be sharing her Help Apheresis journey, her journey to diagnostics, and any treatments that may become available to her in the hope that she will help other patients navigate their own diagnoses.

Trisha’s immunoglobulin profile has recently been highlighted as a potential underlying cause of ME/CFS, and is being research as a possible effective biomarker. 

She is currently collating the physical work that it takes to keep her nerves firing each day into YouTube videos, with the help of her carer, in the hope that other patients’ carers and loved ones will be able to adopt and apply the skillset that has kept her breathing, ingesting and partially mobilising all of these years.

Before she lost the capacity to type, she would apply her limited available energy to advocacy volunteer roles with #MEAction and #millionsmissing voice global pages. Because she has had to prioritise her health needs, she stepped down from her advocacy roles last November.

Thank you for your time and however much or little you are able to donate towards helping Trish not just get her life back, but save her life too.  We really appreciate you embarking on this journey with us. ✨