Please Donate for Hollie's Vascular Compressions Surgery

Hello and thanks for visiting my daughter’s fundraising page, her name is Hollie, and this is her story told from her point of view:

I am 23 years old and have been unwell for 10 years, unable to live any semblance of a “normal” life. I have multiple medical conditions many of which are related to Hypermobile Ehlers Danlos Syndrome (“EDS”), which is a connective tissue disorder that effects every part of the body including blood vessels, joints, muscle, skin and tissue.

For the past two years I have been mainly bed bound. I spent 5 months as an inpatient in hospital and for the rest of the time in a hospital bed at home. I rarely leave my house and if I do it is for hospital appointments / procedures, and I use an electric wheelchair. The reason why I am asking for help is because of my severe vascular compression syndromes that are leaving me in agonising pain, unable to sit upright/stand or eat/drink anything orally. I cannot get the experienced help I need here in the UK so I am having to self-fund the operation(s) I need abroad which as you can imagine is incredibly expensive. For my full story, please continue reading.

In 2023 my stomach stopped working properly and I was diagnosed with severe gastroparesis. In simple terms my stomach is paralysed which means it does not move food through it correctly and as a result this impacted my ability to eat. I lost 18kg which was a third of my body weight and ended with severe epigastric pain which rendered me bed bound and hospitalised and unable to eat due to pain. I was then diagnosed with Median Arcuate Ligament Syndrome (“MALS”), which is a rare vascular compression where the median arcuate ligament compresses the celiac artery. I had an operation in the UK in December 2023 to release the ligament, and it relieved the epigastric pain but unfortunately resulted in another similar pain which has got progressively worse. Since April 2025, I am now fully bed bound and cannot sit or stand without severe pain.

I have been fed through a NJ feeding tube past my stomach and into my jejunum for 2 years. After my operation, alongside the NJ feeding tube, I was able to eat small amounts of soft food orally, which allowed me to gain 11kg to get me back to a healthy weight. Sadly, since then, my severe pain has worsened and is exacerbated by eating. I had to stop eating orally in June of this year and although I am still NJ tube fed, I am unable to maintain my weight and am now losing weight again.

As a result of my recent scans, I have now been diagnosed with Superior Mesenteric Artery Syndrome (“SMAS”), another rare vascular compression where my duodenum (part of my small bowel) is being compressed between two arteries, my aorta, and my superior mesenteric artery. The distance and angle between these two arteries through which the duodenum passes should be 10–34 mm/25-65 degrees or more in healthy individuals. My distance and angle are only 4mm and 13 degrees respectively.

The exact cause of my pain is difficult to determine but doctors have confirmed that it is likely to be the result of nerves not being removed during the original MALS operation (neurogenic MALS) as well as the severe compression of my duodenum (SMAS).

For my ongoing MALS pain the NHS are not ruling out performing revisional surgery but are currently offering me a nerve ablation, which is a procedure usually reserved for end-of-life pancreatic cancer patients to relieve pain. An expert in compressions abroad has labelled this as an ‘aggressive approach’. It will need to be regularly repeated as it usually only lasts months and has potentially risky side effects. It will not address the root cause of my pain and I don’t feel it is appropriate given I am only 23 years old and deserve to live the rest of my life pain free.

The NHS specialist hospital I am under who are the most experienced in the UK (pretty much the only one) that deal with compressions have never performed revisional MALS surgery. Abroad, there are surgeons who have and are experienced in how complex and difficult these operations are and specifically in removing the nerves from the MALS area. I need this experience to give me the best chance of being pain-free.

SMAS wise the only procedure offered in the UK (known as a DDJ - Duodenojejunostomy), tries to create a bypass to send food in a different direction to avoid the compression, but it still leaves the physical compression in place. This surgery has high failure rates and isn’t that successful specifically for EDS & MCAS patients – some examples can be the connective tissue causing sagging and the fact that food doesn’t always want to move through the bypass and so still goes into the compression. In addition, if the pain is being caused by the compression of the duodenum, which we think it is in my case, then the pain will continue as this surgery doesn’t address the compression itself.

There is significant medical expertise in the US regarding vascular compressions including an operation for SMAS (called the Alvear-Fowlkes procedure) that alleviates the compression and removes the duodenum from between the two arteries. I have been told by a specialist doctor that this procedure seems to be more successful in their EDS patients.

My treatment options on the NHS are limited and are higher risk. It’s not possible to get the help that I need in the UK due to a lack of experience of vascular compression surgery as well as the fact that there is no surgeon trained in the UK to undertake the Alvear-Fowlkes procedure for SMAS.

I would like to add the doctors who I am under on the NHS at my specialist hospital are amazing and incredibly supportive and I have been very pleased with the care I am receiving. Unfortunately within the NHS and in the UK it's just not possible to resolve my compressions.

I cannot cope with the severe pain that I am in, it’s managed by very strong pain relief and lying down. I have no quality of life, and I am seeking help from doctors abroad experienced in vascular compressions to alleviate my pain long term.

As a result of the very limited options available in the UK, I have no option but to fund raise to cover the costs of addressing my vascular compressions by going abroad for surgery. This is obviously incredibly expensive and therefore any donation you can make, however small, will help towards getting me the support that I need to get me out of pain which will improve my quality of life dramatically.

Despite everything, I am determined to stay positive, and I hope by sharing my story I am able to cover the costs of the treatment I so desperately need.

Thank you so much for taking the time to read my story. Your kindness, generosity and support mean everything to me :)

Hollie

Any funds raised will be put towards –

- The full cost of my operation(s)

- Any costs of the hospital stay / ongoing treatment afterwards.

- My costs for travel and staying abroad for however long is necessary to recover and be safe to fly home.

For those interested in addition to EDS, I have also been diagnosed with the following conditions: -

• Vascular compressions – MALS, SMAS, NCS & MTS

• Postural Orthostatic Tachycardia Syndrome

• Mast Cell Activation Syndrome

• Chronic fatigue syndrome

• Coeliac disease

• Gastroparesis

• Hypothroidism

• Bowel dysmotility

• Hypoglycaemia

• Gastroptosis

I am too unwell so my parents (Lorna Jordan & Ben Jordan) are my guarantor and will therefore be receiving any funds and in charge of the payments for my surgery and travel abroad.

As parents of Hollie, we are extremely proud of her. She is an intelligent and brave young lady who has faced more challenges and setbacks than most 23-year-olds. We have been inspired by her determination and hope that after listening to her story, you will be inspired too. Any donations, no matter how small, will make a massive contribution to Hollie being able to regain the normal life she so richly deserves.