Dani's Journey
Donation protected
Hi there my names Danielle and I'm a 26year old final law student who suffered with a rare genetic illness called Ehlers-Danlos Syndrome which has progesssily gotten worse over the past 13 year. I'm now totally reliant on a feeding tube for all of my nutrition and my mobility is so bad due to sever dislocations all over my body I can only walk 2 meters with my smart crutches. I have set up this go fund me to raise money for a wheelchair and for investigation via a private doctors that the NHS is refusing to do.
Over the past year I have been in hospital for 26 weeks and counting due to the comrobiditied of my Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome is a rare genetic disorder which effect the collegan, collegen make up 70% of the body therefore it is a multi-sytem disorder. As a result of my EDS I also have the following condition: Postural Tachycardia Syndrome, Gastroparesis, Slow Transit Colon, Narcotic Bowel Syndrome, Polyeystic Ovary Syndrome, Raynauds Phenomenal, Auditory Processing Disorder, Mast Cell Activation Syndrome, Chronic Fatigue syndrome, Underactive Bladder, Bladder Retention, Chronic Pain, Non Epileptic Seizures and a Calcified Vein in my right Kidney.
Unfortunately there is no cure for EDS or any of the other conditions I suffer with we are only able to manage my symptoms.
Currently I am hospialized due to my sever gastric issues (Gastroparesis, slow Transit Colon, Narcotic Bowel Syndrome and Gi dysmotility) putting it simply I can not eat anything orally and rely on my NJ tube for my nutrition and I can only orally drink around 400mls a day, however my feeding rate is so low I am only receiving 575 kcal per day which is not enough to survive on. I have been on this hospital admission 13 weeks and counting and my doctors have said they do not understand why I can not tolerate enough feed to sustain myself but they have ran out of options now. I see a GI consultant privately who has suggested a series of tests and scans to determine what is wrong however my NHS consultant is refusing to do them. I am trying to raise money to go and get the scan done privately as I really want to get my life back but I cannot afford the scans on my own.
Thank you for taking the time to read my story, spread awareness and donate.
Over the past year I have been in hospital for 26 weeks and counting due to the comrobiditied of my Ehlers-Danlos Syndrome. Ehlers-Danlos Syndrome is a rare genetic disorder which effect the collegan, collegen make up 70% of the body therefore it is a multi-sytem disorder. As a result of my EDS I also have the following condition: Postural Tachycardia Syndrome, Gastroparesis, Slow Transit Colon, Narcotic Bowel Syndrome, Polyeystic Ovary Syndrome, Raynauds Phenomenal, Auditory Processing Disorder, Mast Cell Activation Syndrome, Chronic Fatigue syndrome, Underactive Bladder, Bladder Retention, Chronic Pain, Non Epileptic Seizures and a Calcified Vein in my right Kidney.
Unfortunately there is no cure for EDS or any of the other conditions I suffer with we are only able to manage my symptoms.
Currently I am hospialized due to my sever gastric issues (Gastroparesis, slow Transit Colon, Narcotic Bowel Syndrome and Gi dysmotility) putting it simply I can not eat anything orally and rely on my NJ tube for my nutrition and I can only orally drink around 400mls a day, however my feeding rate is so low I am only receiving 575 kcal per day which is not enough to survive on. I have been on this hospital admission 13 weeks and counting and my doctors have said they do not understand why I can not tolerate enough feed to sustain myself but they have ran out of options now. I see a GI consultant privately who has suggested a series of tests and scans to determine what is wrong however my NHS consultant is refusing to do them. I am trying to raise money to go and get the scan done privately as I really want to get my life back but I cannot afford the scans on my own.
Thank you for taking the time to read my story, spread awareness and donate.
Organizer
Danielle Cassar
Organizer
Wales