Ehlers-Danlos Treatment

About EDS
Ehlers-Danlos syndrome is a multisystemic, genetic, connective tissue disorder causing the production of faulty collagen -the glue that holds our bodies together. In turn, this fault may result in daily partial dislocations of joints all over the body. Sometimes full dislocations. Internal organs, digestion, eyes, etc. can also all be affected -any part of the body that utilises collagen. On top of this, we are prone to so many comorbidities (secondary conditions, related to EDS, which also cause their own issues and add to medical costs both here and abroad).

Ireland currently has no appointed qualified consultant for the condition or patient guidelines in place, and while efforts are being made by EDS patients to petition the government (check out my campaign website www.eds4ire.ie and follow us on social media - search #EDS4IRE), most eventually need to pay out of pocket to go to the hypermobility clinic in London, and even to other countries further away. Suffering on waiting lists, we are eventually forced to pay privately. There are two private Rheumatologist here in Ireland that will test and diagnose but other doctors have very little training. Because of this our health deteriorates, and our bodies become deconditioned.  I wasn't diagnosed until my late 20's (which isn't unusual unfortunately) after living in a life in pain and looking for answers with numerous doctors.

EDS patients are generally not supported on the travel abroad scheme because some clinics in the UK are private, and because we have no qualified Irish consultant here to refer us onto the scheme. 

About Me
I was diagnosed by a private consultant in Ireland, after being in pain my whole life. I had untreated hip dysplasia as a child, told I had other issues but never properly diagnosed. In my mid 20's the pain became unbearable and I went to seek answers. I was eventually even told that I more than likely had EDS, but no one within the HSE would actually officially diagnose me! After privately receiving my diagnosing, I was advised to travel to the UK for further help. 

My UK story began in November 2017, when I first met with a consultant in a hypermobility unit. Flights, buses and hotels all take a financial and emotional toll, as well as of course the actual appointments, follow up tests and so on. In February 2018 I finally had an upright MRI (which we do not have in Ireland) and met with a physio who is qualified in hypermobile patients. The result of my MRI shows Chairi Malformation (brain herniation into spinal canal) of 10mm and atlanto-axial instability (causing instability of the neck vertebrae). My Chiari Malformation does not show on a normal MRI machine due to the nature of my connective tissue, so I need this checked on an upright MRI.

I'm very symptomatic -medications only taking the edge off the tinnitus, vertigo, sensory issues and feeling of pressure win my brain.

I also have issues relating to POTS/ dysautonomia/ heart issues currently, as this comorbidity lowers my BP and causes dizziness and drop attacks/ fainting, tachycardia and sudden drops in HR. Which makes life also quite difficult. Unfortunately the cardiologists with expertise in this field is in the private sector and few and far in between in Ireland.

My other comorbidities include stomach issues such as slow gut motility and eyesight (which drastically changes from day to day).

At present we are trying to make my life as comfortable as possible, when possible we invest in braces to prevent dislocations and some of the pain. I use a walker but tire easily, due to a shallow hip socket from the untreated hip dysplasia. I have been refused basic surgery in Ireland to correct the issue because orthopaedic surgeons here are not trained in Ehlers-Danlos issues and they will not take the advice of the London consultant. Because of this I also have a wheelchair which has become a more common part of my life as I age. Like many, I don't qualify for the primary medical certificate and so cannot buy a power wheelchair as we cannot afford car adaptions/ a car that would accurate such a chair... these are the costings of such illnesses, before medical issues such as regular flights and phone consolations and private scans in other countries are even taken in to account.

In 2020 I gave birth to a beautiful baby girl... Unfortunately the hospital didn't listen to the advice of their own leading anaesthetist and epidural was administered. Since then I have had an increase in Chiari related symptoms - As expected. According to a recent EEG (August 2020) it now seems I have epilepsy. I now have to have another upright MRI performed to see how the epidural has effected the Chiari and if anything other than epilepsy has resulted from this huge fuck up... To say I am upset and done with this country is an understatement. I have intense headaches daily, my hands and feet are numb and tingly, as is my face/ head... all the symptoms I previously had times a million. Plus daily, partial seizures.

And now I have to travel to another country for healthcare, during a pandemic - Because of A) Lack of healthcare fro EDS patients here at home and B) Complete lack of awareness and unwillingness of doctors to learn about health conditions, resulting in total negligence. 

My story is in no way unique unfortunately for the countless of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Sufferers in Ireland. 

Thanks for reading. Please, please, ONLY donate if you afford to do so. You can also keep up-to-date on my journey through my #EDS4IRE social media pages:
Facebook
Instagram 
Twitter 

And website www.eds4ire.ie as well as my blog: www.cripplebaby.com and make sure to check under the "updates" section on here for the latest news. 

Sign the petition for an Irish consultant also here:
https://my.uplift.ie/petitions/appoint-a-qualified-consultant-for-ehlers-danlos-syndrome-in-ireland 

You can email me about the campaign at [email redacted]