Niamh's Ehlers Danlos Syndrome Treatment

Hey everyone. I hope you are all keeping well and happy. Thank you for all the kind wishes I received while I was in hospital & since I came home. They were very much appreciated.

Unfortunately, in the last month or so I've had significant deterioration of my health issues and now I'm forced to consider fundraising again. I really hate to have to ask anyone for money, especially these days and if I had any other option I wouldn't, especially when a lot of you reading this update have donated generously in the past.

Without going into all my health issues, I honestly can't remember the last time I had a day when I was not in pain. The nerves all over my body have been very damaged and I'm now unable to hold my head upright for more than a few hours a day. This affects how long I can chat for and my ability to chew so I am now on a soft food diet. I am struggling with driving and doing day to day tasks at home. I have been unable to cook and need extra help in the house to keep on top of things. I'm trying to sort out nerve testing privately at the moment but I have no idea how long I will be left waiting. After waiting 6 years for pain management, they are now leaving me to wait another year to get infusions to help with my pain levels.

I was already so limited in my abilities due to EDS but as a Mom living alone with my daughter this latest relapse has had a devastating effect on my ability to move forward with life. I feel I am existing as opposed to living. I have been surviving on 4/5 hours a sleep a night since January as I am struggling with bladder and digestive issues.

I have a long road ahead of me in relation to testing and the medical system is so flawed in Ireland. I really fear that I am wasting time trying to get help in this country at this stage. I think my only option is to return to the UK, to get help from EDS experts, when I feel well enough to travel.

In the last 2 years I have paid thousands of euros on private consultants, tests and dental work but I'm unable to work and disability allowance only goes so far. The added financial pressure of trying to sort out meals and extra help at home is difficult on top of constant private tests . Financially I have no idea what I will be facing until I get to the UK but I will target as I go if necessary,

I would really appreciate any donation no matter how small or if you can share this on your page.

Thank you ,

Niamh