Life Changing Saving Surgery

Hi! I’m Lizzie! I am 23 years old and I was born with Ehlers danlos syndrome; A rare genetic multi systematic, organ involved connective tissue disorder that causes faulty collagen… Collagen being the glue that holds our organs, skin, muscles & bones together. Resulting in many comorbidities. Comorbidities being symptoms and illnesses that have developed as a result of the Ehlers Danlos syndrome itself… It’s ultimately an illness that causes other illnesses.

EDS is a spectrum. Unfortunately, I am on the severe end of that scale. And over the span of my life I have developed multiple rare, life changing and life threatening conditions. Including but not limited to gastroparesis, PoTS, as well as having a TIA stroke in December 2022. I have many other illnesses and symptoms, one of them being severe issues with my entire urinary tract and system. Which is the reason for writing this today…

Approximately 3 years ago, I went into sudden bladder failure, which was only the start of a whole list of problems that I have developed since. In my urinary tract, I suffer with detrusor failure, chronic kidney disease, chronic pyelonephritis, vesicoureteral renal reflux, scarring on my right kidney, severe bladder pain yet at the same time I have no sensation either. I am laying here at 23 with a surgical tube; a suprapubic catheter, jutting out of my stomach to drain the chronically infected urine from my failed bladder. After 3 years of living with these severe problems, we are now in the dangerous position of being on constant antibiotic treatment to attack my chronic pyelonephritis, which is essentially the combination of kidney disease and persistent kidney infections. Both of which are life altering & life threatening…

I desperately need major surgery to not only save my life but to improve the quality of life massively too. I need a cystectomy, a urostomy, stents placed in my right kidney and to create a completely new route and passage way, made out of a small part of my intestines to make a new passageway and then a stoma for my urine to drain on the outside of my body, into a bag. I currently have a suprapubic catheter, a surgical tube inserted through my stomach and into my bladder... this is only adding to the severity of my infections. It’s lead to sepsis, urosepsis 3 times. These infections will end up killing me. I’m becoming resistant to antibiotics that are sensitive to the rare bacterias I continue to grow in my kidneys, bladder and SPC tube site, which is extremely dangerous.

I am stuck in a hospital bed all day, everyday. I am so severely ill that I can’t leave the house unless it’s for appointments. I am in a wheelchair. And I am currently the sickest I have ever been. The surgery I so desperately need is at least a 3 year waiting list… and that is classed as “urgent” However, my surgeon also treats private patients, but this major surgery certainly isn’t cheap. £70.000! Something that we cannot afford and now I’m in such a dangerous position, we desperately need help.

Whether that is through kindly and so gratefully donating or sharing this to everyone you possibly can... anything, however small, absolutely helps. I want to live and to live a life where I’m no longer in severe pain, and the life threatening infections are stopped which simply cannot be done anytime soon through the NHS. Our fear is that one day, my body can no longer cope. And the worst will happen. Which is why we need your help.

Please, if you can help by donating or sharing, know you are saving my life in more ways than one. Thank you. Lizzie.

Hello I’m Lizzie’s brother (13 years old) and I’m going to tell you how important it is to are family that her getting the life changing surgery that she desperately needs for her to have a better quality of life. Lizzie has had a profound quality of life so far but this surgery will change everything for the better, it is so hard to see her in so much pain day in day out and all are family wants to do is help her. For a long time she has needed this and she has got the opportunity to have it and we don’t want to waste this chance. For me as her brother to see her like that breaks my heart.

Hello, I’m Lizzie’s Mum. As a Mum, all I want for my daughter is to live her life to the full. At present, Lizzie is in a hospital bed in the lounge. When she does leave the house, it’s in a wheelchair. She is in constant pain. This surgery would be life changing and therefore, life saving. The NHS waiting list for this procedure is currently around 3 years. It isn’t so much as to how long she has to wait, it’s what could happen during that time. The more infections she has the weaker she becomes and her body becomes resistant to antibiotics. Sepsis is always a major worry too. Anything you can give to help Lizzie get this surgery, would be incredible. Thank you.