Specialist care for EDS in London.

I have been referred to London by my gp to see an eds specialist. There is not one available in Ireland, bar some rheumatologists with an "interest" in ehlers danlos syndrome. I also have a cardiologist here, but he has little to no knowledge of postural orthostatic tachycardia syndrome or any interest in learning how to accurately treat it. I treat my mast cell activation syndrome myself with medication, avoidance of things that I have randomly become newly allergic to and with fingers crossed that antihistamines and inhalers can keep me out of a&e once breathing becomes difficult!  Lymph node swelling, rashes, limb & facial swelling are a daily occurrence.  Painful "clicky" joints and fingers, subluxations can occur randomly. Currently, I have ulnar nerve root impingement most likely due to shoulder sublxation in my sleep and incorrect physio advice. I have a lot of soft tissue damage. My ideal goal would be able to travel to London, get an accurate diagnosis and a proper plan on how to manage my conditions, see a geneticist and a physio who deals with hypermobility so I can get my life back on track. The hse will not pay for this as unfortunately any consultants/treatments/tests will be carried out in a private hospital over there. I may need multiple consults, tests etc, some of which I have learned are as much as £360. This is all without factoring in travel costs, accommodation and leave from work as we don't get paid sick pay. I am on a waiting list to be seen in Harold's cross, our lady's hospice in Dublin, but I could potentially be waiting over a year now, and they only focus on joints/ physio alone. So there it is, that's my story. If anyone would like to help me make this goal a reality, please donate what you can.  ❤

Donations ()

  • Anonymous 
    • €100 
    • 7 mos
  • Anonymous 
    • €200 
    • 11 mos
  • Anonymous 
    • €200 
    • 12 mos
  • Nathan Ryan 
    • €1,000 
    • 13 mos
  • Anonymous 
    • €200 
    • 15 mos
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Organizer

Shauna Sheehan 
Organizer
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