Help Shannon regain her health with the Gastric Pacemaker

This is Shannon. She is my sister and my best friend in the entire world. Over the last few years I have watched her lose her joy and her health to a life threatening disease known as gastroparesis. Once a glowing young woman with big dreams and a big personality, she is now a shadow of her former self.

My sister's life changed completely in 2022 when suddenly, she developed unexplained bloating and discomfort, stomach pains and severe and constant nausea. Her symptoms progressed while we waited for doctors referrals and had many hospital visits, and eventually she had to quit her studies due to the severity of her symptoms. She struggled to eat even a few bites of meals without feeling horrendously full, cripplingly nauseous and in significant pain. Little did we know, it was because food was moving far too slowly through her stomach.

Shannon's weight dropped over the course of 6 months from a healthy 64kg to 42kg despite her best efforts to consume whatever she could.

As her weight plummeted, many healthcare professionals wrongly dismissed her symptoms as "just anxiety" or an eating disorder. This misdiagnosis led to traumatic experiences on the NHS, including a mental health hold where she was forced to eat meals she couldn't digest and watched like a hawk whilst crying for help when they wouldnt even run tests to assess the issues with her stomach to help her. We fought tirelessly for months for proper investigations and treatment, eventually seeking help from a private doctor in London via phone consultation, who confirmed the gastroparesis diagnosis we had suspected.

Gastroparesis is a lifelong condition that prevents the stomach from emptying properly, operating instead at a much slower rate or sometimes not at all, where the electrical signals from the brain to the stomach that move food through the digestive tract are impaired. This makes it extremely uncomfortable and difficult for people to gain weight or digest food or water normally. The causes are varied but the most common causes are diabetes, ozempic and vagus nerve damage from surgery. You can read more about gastroparesis here . Unfortunately in some people there is no known cause as is the case with Shannon the doctors have no idea why this happened to her. Although we suspect it is caused by genetic hypermobility (Ehlers Danlos syndrome) and are waiting for a diagnosis on this. Shannon's case of gastroparesis has progressed rapidly and is now severe. We've tried numerous treatments over the past year year and a half since the diagnosis, including:

- Probiotics

- Various nausea and gut motility medications prescribed by GPs

- Botox injections to the stomach

- Switching from an NJ tube (for 7 months) to a PEG-J tube to bypass her stomach completely (its been 4 months and counting)

- Chinese medicine and accupuncture

Despite these efforts, Shannon is not responding to medications as we had hoped. For a year now, she's been receiving nutrition nightly through a tube, but her symptoms and condition continues to worsen. She's now at a dangerously low weight of 36kg and unable to increase her caloric intake due to the limitations of tube feeding and orally. She hasn't been able to eat food for a year and can barely tolerate any liquids.

We are now waiting for a wider tube replacement to her jejunum (the current one is partially broken) and to see if erythromycin can alleviate some of her symptoms to allow her to consume enough nutrition with the tube to help her gain weight.

However, being at such a low weight for so long also comes with issues - malnutrition, dehydration and blood sugar issues as well as hair loss, feinting and chronically low potassium. Her heart is now starting to struggle - just this week she was in hospital for severe chest pains and an EKG revealed that she has long QT syndrome , further complicating things. This is why we want to get her this treatment as soon as possible. Her gastroenterologists have said they wont do anything more for her as they dont have a treatment protocol for gastroparesis past this point for her. Even though other people seem to be receiving trestment like TPN whoch can help patients gain weight and receive nutrition intravenously.

Therefore the next best hope we have is the gastric pacemaker , a treatment we were told is not yet available on the NHS for non-diabetic patients. This groundbreaking device works by sending signals or pulses to the stomach via electrodes under the skin, allowing it to move and empty as if functioning normally again. Studies show it can significantly reduce nausea and vomiting, improve quality of life, and decrease hospitalizations, and can even help people to eat some foods again.

This treatment could be a lifeline for Shannon after years of enduring traumatic medical gaslighting, two botched tube fitting procedures that have left her with a partially working tube, traumatic memories, stoma infections and constant pain from the rubbing of an internal bumper. With the gastric pacemaker, she stands a chance at a semi-normal life, potentially allowing her to digest food again, gain weight, eat, socialize, and pursue her passions once again.

The procedure costs around £40,000, not including aftercare, and battery replacements which will require travel. We were quoted that amount plus more for Shannon to get this procedure done privately by the best doctor in the UK who is based in London. He has given us hope with a treatment plan outlined for Shannon can gain enough weight to have the procedure which we know will not be without struggle. However, we simply cannot afford this treatment on our own so I am reaching out for your support to give my sister a chance to reclaim her life.

This GoFundMe is our last hope to access this life-changing therapy as the NHS will not treat her further. Every donation you make, even as little as £1, brings us closer to the procedure which has the power to restore Shannon's health, dignity, and future. Your money will be used to pay for the procedure with Dr Shidrawi at the Wellington hospital in London and for travel costs. If there is anything leftover we will donate it to others in need of gastroparesis treatment.

If you're unable to donate, then please share this campaign. Your support means so much to us and could save a life whilst helping to raise awareness about gastroparesis for others suffering from this grossly underfunded condition. Thankyou for your kindness and patience in reading this and thankyou for your contribution.