Welcomes and introductions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Hi, my name is Lucy

I'm Lucy, I'm 21 and I have a life-limiting and life-threatening presentation of a condition called Ehlers-Danlos Syndrome. You may or may not have heard of it, but basically it's a problem with faulty collagen. Instead of my collagen acting like the glue of my tissues, stretching and contracting like a rubber band and giving everything strength, mine is more like over-chewed chewing gum; it stretches, but doesn't stretch back, tears easily and gets thinner and thinner the more it is stretched, or at worse like wet tissue paper; it just tears/falls apart. In my case it has caused numerous complications including multiple organ failure (intestinal and bladder failure), Chronic Intestinal Pseudo Obstruction, Autonomic Neuropathy/POTS, Neurogenic Bladder, Kyphoscoliosis, Spinal Degeneration, Osteoporosis, Hyperthyroidism, and heart and lung problems under investigation, plus other things being investigated. I am fed straight into my bloodstream (TPN) via a Hickman line into my heart, through which all my fluid and the majority of my medication also goes through. I have other bags and tubes bypassing my failing organs. I am wheelchair bound but currently forced to spend the majority of my time in bed, however we are now fundraising for a new wheelchair to allow me to spend much longer out of bed and do more. I live in severe pain, my joints dislocate numerous times per day, I cannot eat or drink (no food for 6 years now), I suffer with nausea, headaches and breathlessness, when I sit up not enough blood gets up to my brain so I become more incoherent until or unless I pass out completely, recurrent/constant infections and more.

Enough about that. Despite the above I do a lot of charity work, writing, public speaking, appearing in videos and recordings and I have even appeared on the TV and radio. I have spoken in Parliament and at the Department of Health, and worked with numerous charities including the Council for Disabled Children, Transition Information Network, National Voices, Essex Coalition for Disabled People, Prepare for Adulthood, National Council for Palliative Care, Hospice UK, Dying Matters, Think Local Act Personal, Ehlers-Danlos Support UK and more, and will now start working with Scope as a Community Champion, as well as working with the local CCG and with the Royal College of Physicians. I have lobbied my MP for almost 5 years to improve disabled access in the local area too. I am Ambassador/Young Avenger for Together for Short Lives, the first Global Youth Ambassador for the International Children's Palliative Care Network, Trustee of the Pseudo Obstruction Research Trust and Ambassador for Dreams Come True with more work in the pipeline. I was recently announced as one of the Health Service Journal's 50 Patient Leaders, an award for people who are changing and shaping healthcare, and am a Diana Award winner. You can read more about me on my website www.lucy-watts.co.uk

Anyway I'll stop waffling on now. You will see me around on the online community and am always welcome to be contacted for support and advice.

Best wishes,
Lucy

Replies

Sign in or join us to comment.