A Patient's Perspective: Lucy Stafford

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My name is Lucy Stafford and I am a 19 year old university student.

I have a genetic condition called Ehlers-Danlos Syndrome, which is a type of connective tissue disorder.

* When did you start noticing symptoms of your EDS? What were they and how did they affect you?

 My symptoms started to impact my day-to-day life when I was 13, starting with lower back pain caused by herniated and degenerated discs. I had spinal surgery to try and improve the pain which did not work, so I was prescribed high doses of opiates and muscle relaxants which caused horrendous side effects and withdrawals. 


* What happened when your EDS was at its worst?

My health deteriorated significantly in the following years and I spent most of 2016-7 in hospital due to gastrointestinal and bladder complications of EDS. I couldn’t eat, drink or pee and was kept alive by a tube into my heart delivering intravenous nutrition. This made me very unwell with sepsis infections and blood clots and was a very scary time. 

* What did you think of cannabis before you were ill? How did you discover cannabis helped and what was the change in you once you started medicating with it?

I remember being told in school by a teacher that you could, in fact, overdose on cannabis and it could kill you, but apart from that I never had any experiences or views on cannabis. 

In Summer of 2018 I suffered from a very severe jaw dislocation which did not relocate after surgery or high levels of muscle relaxants as my jaw was in spasm. My pain specialist, out of complete desperation, tried to prescribe me Sativex (cannabis based medicinal product) which got denied funding immediately. He said jokingly to me that as I was a teenager, if I wanted to smoke a joint, I could go ahead and give it a go. That was the best advice I’ve ever received!

Cannabis quickly helped my jaw return to it’s correct position, but my improvements didn’t stop there. I quickly decided that I wanted to stop the fentanyl, diazepam and anti-emetics I was prescribed, which made me feel like a new person. My digestive system significantly improved in functioning and I had my feeding tubes removed earlier this year. 


* How are you now, and how much of your improvement do you think was helped by cannabis?

I am continuing to do really, really well. EDS is a genetic condition which means it will never go away, but my quality of life and ability to function is so much better than I could have ever dreamed. I still get all of my symptoms to some extent and they still flare up, but never as severely as before medicating with cannabis.

Knowing that when I dislocate one of my joints that I can reduce my pain levels from a 10 and passing out to a 4 within 5 minutes of vaping cannabis changes everything for me. I am now starting to walk again, having been in a wheelchair for 3 years. It’s hard work but thankfully possible with cannabis!


*   How did the UPA help you, and why do you volunteer for the UPA?

Meeting other patients who medicated with cannabis felt so liberating for me - it gave me so much confidence in things like simply vaping in public (something I was terrified of before). The discussion group on Facebook has been so useful and I am so grateful to everybody for their support & advice. It can feel so isolating living with a chronic illness, particularly when your medicine is illegal and has so much stigma attached to it. 

I volunteer for the UPA to hopefully give back & help others who medicate with cannabis. When I first started medicating with cannabis, I didn’t know anybody else in a similar situation and it would have helped massively to have that support. I think that the UPA is vital in representing the patient voice to both the medical profession and cannabis industry so that everybody can one day easily access the safe, legal medicine we need.