Help Annie Beat MALS

Hello, I’m raising money for my 20 year old sister to get surgery that will hopefully give her her life back. Annie has dealt with gastrointestinal issues for 2 years after a stomach virus left her being unable to tolerate food and then eventually even struggling with liquids. She went through multiple tests and saw many different doctors as they couldn’t figure out what was wrong. It was a dark period of our lives watching Annie continue to lose weight rapidly while being hopeless to help her. She withdrew from friends and struggled to see hope as she couldn't enjoy the things she once did. Finally, in March 2021 after ongoing tests Annie was diagnosed with severe Gastroparesis which means that her stomach was paralysed. Although Gastroparesis is a chronic lifelong condition we found some comfort in finally knowing what was wrong, and we sought out to manage it. Annie was put on many different medications - none of which made any difference to her symptoms, and she had a small operation to open a muscle at the end of her stomach; agonisingly, this didn’t give her any relief either. In April 2021 Annie flew to Texas to have pioneering surgery to improve her gastric emptying. We were very hopeful and after a tough few months of recovery we had to come to the realisation that her symptoms had still not improved. We were losing hope as doctors didn’t seem to have any answers for us, until Annie received a message on Facebook from the Gastroparesis Support Group telling her to look into MALS - also known as Median Arcuate Ligament Syndrome.

 

Median arcuate ligament syndrome (MALS) is a condition that occurs when fibers of the MAL forming the aortic hiatus compress the celiac trunk, its branches, or other neurogenic structures. Those who believe MALS is a neurologic issue focus on the celiac ganglion as the main cause of a patient’s symptoms. Because of the pressure on the nerves, they have become inflamed beyond the point of repair. These inflamed nerves must be addressed to resolve the patient’s disabling pain.

 

By this point Annie hasn’t eaten solid food for 9 months and lives on Ensure protein shakes which don’t give her as severe symptoms. She suffers mainly with extreme pain, abdominal pressure/tenderness, nausea, vomiting, fatigue, weight loss, and dizziness. Her symptoms are progressive meaning that she continues to get worse as time goes on.

 

Annie is pursuing a career in finance and has managed to keep going throughout this difficult period, however it hasn’t been without struggle and she is currently working from home as she is too weak to travel each day.

 

Annie underwent further testing and we consulted a top MALS surgeon in Connecticut, USA, who has diagnosed Annie with the MALS anatomy. This means she was born with a low lying diaphragm which can inflame the nerves of the celiac ganglion, but symptoms can remain dormant for sometime, which is why she was seemingly healthy up until the age of 18.

 

It is becoming increasingly urgent for Annie to have surgery as she is now very underweight and it’s horrible to watch her become weaker.

 

This is no way to live which is why we are fundraising to be able to fly her out to Connecticut to get the surgery she needs to correct her MALS. It requires a 7 night hospital stay as it is open surgery on the chest. She would need to be in the US for a minimum of 2 weeks before she can fly back home to Essex.

 

The funds raised will go towards the surgeon fees, hospital fees, anaesthesia fees, pre op and post op appointments, and medications. 

 

I hope this raises some awareness of both MALS and Gastroparesis, as it can be a long road to diagnoses and recovery. However, we will not give up.

 

Any donation would be appreciated. We want to thank all of those in advance who contribute or share. We are extremely grateful and look forward to getting our Annie back to her usual vibrant and happy self.