Hi thank you so much for taking the time to look at my page,i'm Emma and I'm 33 years old.
In September 2014 I was diagnosed by the doctors with having ehlers danlos syndrome type 3 and that was causing a lot of my health problems,in September 2015 my health took an even worse turn,I was admitted to Addenbrooke's Hospital after spending weeks at my local hospital and told there was no more they could do for me as the NJ and NG tube feeding had failed.
I was told by Addenbrooks I was clinically malnourished,after a series of tests I was diagnosed with intestinal failure,that day I was sent to have a Hickman line inserted and I Began to be fed by tpn.(total parenteral nutrition) The Hickman line is a central line one end sit in the SVC above the heart and the other bit exits the skin. Being fed this way was a big adjustment and took me a lot of time to get used to it,not been able to eat with my babies and them not understanding why broke my heart. What I found even harder was the care needed to look after a central line it is very extensive,ayear later I ended up in hospital with sepsis due to my line I was very poorly and after a lot of antibiotics they still couldn't clear my line. So I lost it and had to have a new one put in I have spent so much time in hospital months and months and the effect that has has on myself and family is unimaginable. Them having to see me so poorly and having to go weeks without even seeing them is very hard to explain to small children,I have been very lucky to receive the help and support from the hospital and family and friends and my occasional therapist managed to get me an electric wheelchair,which means I am lucky enough to be able to get out and about with my family when well enough. But unfortunately my health is still very much deteriorating and I am now unable to get up my stairs to bath wash and changed myself,to be able to get some if my independent I need an electric stair lift and a downstairs wet room. I would love to be able to fund this all myself but in reality I really can't,asking for help is one of the hardest things I'm having to do I just can't go on like this and have tried every other way. I have been given some helping funding but still have a long way to go any help would be so appreciated and mean the world to me and my family,thanks for reading even just to share may help me get to my goal and be able to be more independent. Xx