Niamh' s EDS Treatment
Donation protected
My beautiful wife Niamh was diagnosed 5 years ago with EDS (Ehlers-Danlos Syndrome) after years of undiagnosed illness www.ehlers-danlos.com/what-is-eds/ The condition has affected all aspects of Niamh’s life and has made it very difficult just to do the day to day things. As a mother of 2 girls Niamh has always been a busy and active person who always puts others first, but the condition now means Niamh spends a lot of her time unable to do normal everyday tasks. The condition which has progressed over time causes a huge range of health issues including dysautonomia, impacted bowel, abdominal swelling, chronic back pain, joint subluxation, swelling of the eyes, vision loss, fainting, underactive bladder, infections and the list goes on. It is completely soul destroying to watch as Niamh is constantly in pain and at this stage never has a day where she feels well.
As EDS is a rare disorder there are no specialists available in Ireland. We have met with the EDS specialists in London and have followed their advice in getting all the tests available here through the public health service. We have also spent thousands of euros here seeing private consultants as waiting lists are so long. We have also had genetic testing privately and treatment in Budapest as Niamh needed dental treatment after vomiting every day for three years. However, at this stage we have no further avenues to pursue and the gastroenterologist consultants have discharged Niamh from care as they have feel at this stage she needs more expert help in dealing with such a complex condition. The only option now available to Niamh is to engage the EDS experts in St John & St Elizabeth’s Hospital, London as her full-time consultants.
EDS is not covered under the treatment abroad scheme and as such EDS sufferers in this country have had to resort to the UK for private treatment. Those we have heard from have had great success with their treatment in London. Their ability to provide tests such as stand-up MRI scans and their expertise in reading, diagnosing and treating the symptoms ensure improved results and a higher quality of life. I appreciate your help and thank you for taking the time to read this.
As EDS is a rare disorder there are no specialists available in Ireland. We have met with the EDS specialists in London and have followed their advice in getting all the tests available here through the public health service. We have also spent thousands of euros here seeing private consultants as waiting lists are so long. We have also had genetic testing privately and treatment in Budapest as Niamh needed dental treatment after vomiting every day for three years. However, at this stage we have no further avenues to pursue and the gastroenterologist consultants have discharged Niamh from care as they have feel at this stage she needs more expert help in dealing with such a complex condition. The only option now available to Niamh is to engage the EDS experts in St John & St Elizabeth’s Hospital, London as her full-time consultants.
EDS is not covered under the treatment abroad scheme and as such EDS sufferers in this country have had to resort to the UK for private treatment. Those we have heard from have had great success with their treatment in London. Their ability to provide tests such as stand-up MRI scans and their expertise in reading, diagnosing and treating the symptoms ensure improved results and a higher quality of life. I appreciate your help and thank you for taking the time to read this.
Organizer
Niamh Glynn
Organizer
