My name is Carrie, I’m 35 and I have complex and serious medical issues due to Ehlers Danlos Syndrome (EDS). As a result I am a wheelchair user, but due to deterioration of my condition, I urgently need a specialist powered wheelchair to prevent me becoming bedridden and housebound.
EDS is a connective tissue disorder that causes collagen to be weak and stretchy. It affects everyone differently with some people being mildly affected, yet others can be left with life-threatening and life-limiting complications. I am at the severe end of the spectrum with most of my symptoms being internal. My digestive system is failing, my bladder is severely affected and early-onset arthritis affects most of my joints. My joints dislocate daily, I am in pain all of the time and simple tasks leave me exhausted. Due to my internal issues, I am connected to multiple machines via feeding tubes which pump essential nutrients and fluids directly into my small intestine. I am attached to a stomach drain to relieve pressure from my paralysed stomach and I will shortly be having surgery to place a permanent catheter through my lower abdomen to ensure my failing bladder does not lead to kidney damage.
Neurologically, I have a lot of issues due to EDS. I am undergoing tests to see if my spine has become too weak to hold the weight of my head causing my brain to slip down into my neck, potentially crushing my brainstem.
I also suffer from a lot of common secondary conditions of EDS including autonomic dysfunction/POTS, scoliosis, CSF/ME, mast cell activation disorder, immune weakness, poor muscle tone, chronic pain, heart problems and more.
Some of my issues are life-threatening and I have sadly lost a number of friends with my condition over the last year.
Despite my health issues, I love life and I am grateful for every day. I make sure I smile as much as possible, laugh at least once a day, and do not waste a single moment. I have been passionate about raising awareness about EDS for years and have written a number of blogs and articles on disability, complex patient matters, and care needs. I continue to work full-time as a writer and I am working on my first book as well as maintaining my blog about rural life with complex health issues. As an award-winning artist, I have exhibited at Liverpool Academy of Arts, Hartlepool Art Gallery and won DADA(Deaf and Disability Arts) Emerging Artist Award in 2009 for my photography and digital art work exploring disability and identity, despite being blind at the time due to medication. In my spare time I help GIFT, a charity supporting people with Gastroparesis and Intestinal Failure and campaign for better accessibility in rural areas.
Day-to-day my condition is severely disabling and I require 24hr care from my devoted wife. After relearning to sit up, stand and walk three years ago, I am once again losing my mobility. I cannot stand for more than a few minutes without severe pain and I’m becoming too weak to sit up unsupported for more than a few minutes. I cannot push myself in my wheelchair and I spend most of my time laid down due to my autonomic/neurological symptoms and muscle weakness.
As a result I need a wheelchair that will allow me to move around independently, both indoors and out. The Dragon Powerchair from Dragonmobility is the only chair that can give me back my independence whilst supporting my body to keep me upright and prevent me from becoming bedridden again. The seat will be built specifically for me, fully supporting my spine, whilst offering comfort for my most painful and injured areas. The seat elevates and lowers right down to floor level so I can get down to the ground quickly if my blood pressure crashes. It will allow me to remain upright for long periods of time to reduce further muscle weakness. It will allow all of my medical equipment, tubes and bags to be carried safely and securely, and due to it’s unique design, it will make it much easier for my wife to carry out essential medical and care needs throughout the day. However, the Dragon powerchair costs £22k and there is no financial support from the NHS for powered wheelchairs. Grants from charities are limited for adults and despite working full-time, my income is very low.
The Dragon will enable me to remain working, something I am desperate to do for as long as possible. It will allow me to leave the house on my own for the first time in over a year, and it will enable me to carry out simple tasks like reach the kitchen sink, post a letter or simply sit in the garden on my own.
As I am on the waiting list for an assistance dog, it is essential that I can exercise and train my future Canine Partner and the Dragon is crucial for this.
Every day is a gift and I would like to make a difference to just one person in my lifetime. Whether that be through helping one person receive the correct diagnosis and support they need or ensuring wheelchair users have better access to rural areas.
Any donation you can make will make a difference. If 4,000 people donate just £5 they will have raised £20k.
You can also donate by texting- CBFW80 £5 –to 70070 (to donate a different amount, simply change the 5 for the amount you wish).
Follow my fundraising events at www.facebook.com/carrieswheels
Follow my blog at www.ruralteacake.com