I was born blind in one eye with severe Asthma and thought that was all I’d ever have to contend with, but at 24 I was finally diagnosed with Ehlers Danlos Syndrome after years of suffering. It is a connective tissue disorder which affects the skin, tendons, ligaments, blood vessels, internal organs and bones! Because of it I experience dislocations and subluxations on an almost daily basis. Unfortunately around that time I was also diagnosed with:
-Postural Orthostatic Tachycardia Syndrome
-Mast Cell Activation Disorder
-And multiple Vascular Compressions.
Just when we thought this was the worst I started being unable to tolerate meals and would be sick after eating anything, whilst experiencing crippling pain, distension and nausea. I lost 14kg in little over a month and became severely malnourished. The NHS continuously discharged me, unable to help as they could not find the cause of the issue. Scared I may starve to death, I finally found an incredible professor who I was able to see through a private healthcare scheme (not funded by me or my family as this is not something I would ever be able to afford myself!) He was able to diagnose me with Superior Mesenteric Artery Syndrome. This is incredibly rare vascular compression which has a 1/3 mortality rate, there are little over 500 cases recorded and it affects less than 0.5% of the world's population, it is where the first part of the small intestine is pinched between two arteries, preventing food from passing.
I was given an NJ tube to get nutrition through which would bypass my stomach and the compression. It was then moved to a PEGJ in my stomach however they have been nothing but trouble and over the past nine months I have had seven different tubes, the worst experience I've had with them was on Christmas Day when it fell out on my way to see my family! Just when this seemed too much to deal with my vascular surgeon diagnosed three more compressions:
- Median Arcuate Ligament Syndrome
- Nutcracker Syndrome
- May-Thurner's Syndrome
(One is rare enough so trust me to get diagnosed with four of them!)
As my condition has worsened, I’m now stuck in a hospital in London away from my family, surviving via a PICC line which leads to my Vena Cava and my heart, giving me nutrition intravenously, this is called TPN. I am also suspected of having Right Vertebral Compression Syndrome which affects the blood flow to areas of my brain as they have found a previous dissection of this artery. (Which now makes five compressions).
All of these constrict blood flow to vital organs and arteries, the main being my gut and digestive system, causing intestinal ischemia. They also cause an incredible amount of pain, every day I experience flank, pelvic, leg, and back pain as well as chronic migraines, nausea, low blood pressure, dizziness, fainting, palpitations, high heart rate and chest pain and vomiting, though we hope that being on TPN long-term may improve this whilst I await surgery.
Speaking of which, we are currently working towards me being able to go home on TPN and potentially scheduling life-saving surgery however this process is long and arduous and the surgery needs a lot of planning and therefore will take some time due to the intricacy and risks involved. And when I do go home I will still be met by many challenges due to my chronic conditions, the main being EDS, POTS & MCAD, not being fully covered by my healthcare and sadly they are so rare that the NHS just isn’t equipped to deal with them, as many people with them will sadly have experienced.
I’ve never asked for money before but sadly these illnesses have taken so much from me; a few years ago I was incredibly active, practicing aerial hoop, writing and performing music, whilst managing over a million pound account for a global brand in London. However the less nutrition I get, the worse my EDS flare ups and other conditions become and though I tried to continue like nothing was changing, I eventually had to leave that life behind, as I was no longer healthy enough to keep up with it.
I am currently a music student and anyone who knows me knows that singing is my life and is something I have always wanted to pursue in a professional setting. My University is so supportive which I am incredibly grateful for but being unable to perform feels like losing a piece of myself. Thankfully we recorded music before the worst occurred so I am able to post and share that from my hospital bed, but it doesn't substitute engaging with people and connecting with them through our music in a live setting. I am also now struggling to progress to my third year, despite obtaining excellent grades, as I have missed exams due to recurrent hospitalisations, which have no end in sight. Despite all this I am determined to remain positive and try my best to support others who are suffering with these conditions and as such it has been suggested to me by those close to me and who follow my story to start a fundraising page.
Below I have detailed where the money would be spent and how it would help me, I am more grateful than I could ever put into words for the support and love I have received, it is what has helped me through these incredibly tough times, which I wouldn't wish on anyone. Thank you in advance for all your help and even if you can't donate and leave me a little love note, I'm grateful! Also if you're struggling yourself with any of these and wish to reach out then please do so and I'll try my best to help through my experiences. <3
This is just some of the things the money would go towards: (A lot of my conditions are chronic and even though I have excellent healthcare and try to wiggle some things through, there is a lot that can't be covered, ticking off just a few of these things would be life-changing!)
- A wheelchair for the days I am unable to use crutches or walk at all due to malnourishment and EDS, that is designed for people with joints that dislocate easily - £350 (I also need this every time I have a procedure, for days I have to be out longer periods of time and for post-surgery recovery).
- Pain management inpatient stay program to help with the pain I experience on a daily basis (this is for people like me who are allergic to literally EVERY type of painkiller due to Mast Cell issues) - £300
- IV infusions and special vitamin injections (I am trying to get this on the NHS but it’s a nightmare, vascular compressions are deadly but so rare and as such little is known about them, the lack of getting these has led to dehydration and multiple hospitalisations - They are £200-£250 per IV/injection set and are recommended weekly totalling to around £3000 over a three month period.
- Appointment fees with doctors who have over a year waiting list but specialise in the care I need for my vascular compressions, EDS, POTS & Mast Cell but as some are chronic they are not supported by my healthcare. (One appointment costs in excess of £250 alone!) - £750+
- Help with keeping a roof over my head and paying bills whilst I’m unable to work - £400 a month
- Training my dog to be a service dog so they can detect when I am going to have a ‘POTS’/tachycardia attack or a convulsion as well as help with simple tasks around the house when my mobility is severely affected - £500 (this would save me from fainting without warning and injuring myself - something I do quite frequently!)
- Travel expenses to London as all my consultants are there due to the complexity of my conditions, this costs £30 a time at least and that’s without taxis when my mobility is bad. I have at leats one app every two weeks if not weekly, sometimes even three per week! - £360 over three months.
-Medical supplies, such as PICC line covers, nebulisers, braces and stronger substance finger splints to prevent my fingers from dislocating (I dislocate a couple fingers each week and one is stuck in a constant subluxation which is very sharp and painful!) - £800
- Transport to help get around so I can be more independent and have some form of my life back.
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