A WEST Belfast woman who developed serious auto-immune and digestive issues during Covid says she has seriously thought of going to Switzerland to end her life and her suffering.
Amanda Large (53) from Hillhead developed mild Covid symptoms in January 2022. But she subsequently developed severe reactions to most foods, drinks and medications and has since struggled with health professionals to get to the bottom of her ill-health.
She has also started a campaign to advocate for better healthcare here, with one of her videos on TikTok already having almost 100,000 views.
Speaking to the Andersonstown News, Amanda explained how her life has changed in recent years.
"Before Covid I worked as a successful publicist and had a very sociable lifestyle," she explained.
"I didn’t get Covid until January 2022 and that is when everything changed for me.
"Covid itself wasn’t as bad as I expected. In the aftermath for about six weeks I felt really fatigued, achy and stuff like that.
"I then started to develop allergies and reactions to simple things like curry and coffee and then to the point where it was vegetables and potatoes.
"I was getting worse and having severe diarrhoea multiple times a day. I started to lose a lot of weight and my hair started to fall out.
"I was really anxious. Losing my hair was a huge thing for me. Around eight months in, I had gone from 81kg to 69kg."
Ever since, Amanda has been seeking better treatment and even went private to try and seek answers. The battle to find an answer to her health problems is like "banging your head off a brick wall," she said.
"I started to get really depressed. I just didn’t know what was happening to my body.
"After being backwards and forwards to my GP and even referred to mental health, I decided to go private because I wanted to see a gastroenterologist.
"After some tests and scans, it revealed that my pancreas was all shrivelled up and not producing digestive enzymes. I was referred to immunology and back to the NHS.
"I finally got the referrals I needed to the Belfast Trust – immunology, rheumatology and gastroenterology. It is so frustrating because they don’t seem to communicate with each other."
She says it has taken two years to be seen by immunology and she has still not been seen by rheumatology.
"My worst experience has been with gastroenterology.
"The severe diarrhoea I suffered in the early stages has caused obstructive defecation which means I cannot pass stools naturally.
"I also tested positive for HLAb27 and other bloods indicated autoimmune disease, which is not entirely surprising as there are eight close family members with various autoimmune conditions.
"Dealing with gastroenterology is like banging your head off a brick wall.
"Currently my only point of care is the Emergency Department which I have attended over 50 times."
Amanda says she can spend up to seven hours daily on the toilet, adding that things have been so drastic that she has looked into going to Switzerland to end her life rather than continue like this.
Dignitas is a not-for-profit organisation in Switzerland which offers an assisted death.
"I am down to around four foods that I can safely eat. I can eat a bowl of Rice Krispies in the morning. I have to eat gluten-free and lactose-free. For my dinner, all I can eat is plain chicken broth. That is about it. It is all carbohydrates.
"I have a quality of life that no one should have to accept and I have no support medically. I can’t go on holiday. I don’t go out much because what happens if I need to go to the toilet.
"The longest I have spent on the toilet is eight hours and the average is three to four hours every day. It is such an embarrassing condition and it is absolutely soul-destroying.
"I also have to use a mobility scooter. I can’t walk far at all anymore.
"My quality of life is so bad that I have looked at going to Dignitas. I just feel that my life is over.
"I am not at the stage yet of going to Switzerland because I don’t feel every avenue has been explored with my condition, but I have looked into it.
"I have a 16-year-old son too and he is keeping me going. It is just so hard to get through every day.
"I do think about ending my own life every day. I just can’t cope with my medical issues without the support that I need.
"I have accepted that I will never be able to go back to the life that I used to have. I just want some relief and some happiness and quality of life."
Amanda has been in contact with West Belfast MP Paul Maskey who has promised to look into her case and assist her campaign when it is fully operational.
