My Ehlers-Danlos Treatment

Ehlers-Danlos Syndrome is a complex, genetic, connective tissue disorder. It causes faulty collagen (the glue that holds the body together!), meaning I have partial joint dislocations daily, all over my body, and sometimes even full joint dislocations. It's primarily a chronic pain disorder.

It's not just joints though -It effects anywhere in the body that utilises collagen (internal organs, eyes...), making it a multisystemic disorder. On top of that, I also have -

➡ Chiari Malformation (part of my brain herniating into my spinal canal)
➡ Spinal instability (luckily mild compared to others with EDS/ HSD)
➡ Dysautonomia (POTS crossover - dysfunction of the autonomic nervous system, causes whole host of issues. Effects my heart rate and blood pressure)
➡ Congenital Hiatal Hernia with chronic gastroesophageal reflux disease
➡ Untreated Hip Dysplasia (DHD)/ leg length discrepancy 
➡ Arthritis (due to frequent dislocations and untreated DHD as mentioned above) 
➡ Suspected MCAS (Mast Cell Activation Disorder -High levels of mast cell mediators lead to allergy response)
➡ Slow gut motility (suspected gastroparesis, but relatively mild compared to others)

...All pretty common amongst Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder sufferers! 

Obviously chronic fatigue/ ME mixed in there too (post-viral infection, and general chronic illness related).

Recently, due to the birth of my daughter, I can now add ➡ Epilepsy to the list. See the video for details. I'm now trying to navigate private tests here at home and also plan ahead for London for the end of the year -and beyond.

There is very limited healthcare here for me in Ireland. Like many with EDS/ HSD, I have to travel to private doctors in the UK and do not qualify for treatment abroad schemes (for various reasons including the doctors/ tests being private/ not public). In emergency situations, such as now (and during a pandemic of course), it's all less than ideal. More info in the video.

My care will be ongoing for the next few years, as my issues are chronic, so there's really no set amount. I'll just keep this one open to have... I will only get worse with age unfortunately. My conditions aren't progressive in the traditional sense (that I'm aware of as yet, fingers crossed), but each dislocation and injury is adding strain, particularly to the two hips and right knee -which I have already been told I will never be allowed surgery on in this country (even though one of the hips requires it already).

The once a year pain injections I receive here publicly through HSE, and the community physio I can access (after years of trying to find anyone capable enough to deal with hypermobility) is limited and doesn't touch the surface of what I need to stay mobile and healthy, and to keep the constant pain in any way under control. Furthermore (as you will see in the video), we do not have an upright MRI in Ireland, so I can't keep an eye on the Chiari Malformation or spinal instability.

Some times I can walk for a few minutes with just the crutches or cane but these days are very few and far between, other days I use the rollator (which has been a life saver in terms of socialising). On days I can't at all, I have my wheelchair -which isn't ideal as I'm too weak to self-propel so need assistance most of the time, and a power chair just wouldn't fit in the car (never mind the massive expense of course). When I can't walk it's usually due to the hips and knees, other days it's due to the neck and spine, some days it's due to low BP/ low HR/ fast HR, and if I'm over tired (as fatigue we have noted is a trigger) I can't walk far because of the seizures. 

Believe it or not, EDS isn't as rare as you might think (there are 13 types, some rarer than others). However there is very little awareness amongst doctors here in Ireland, and governments have ALWAYS refused to appoint even one actual consultant, never mind the team of experts someone with EDS/ HSD needs (physio, cardiologist, etc -All these people need to be Ehlers-Danlos aware for us to safely see them). Technically all rheumatologists should know about EDS/ HSD, but they do not. Many have never heard about it, or simply do not believe these (well documented!) conditions exist. It makes every other diagnosis (even more common ones like Chiari Malformation) harder to treat.

Please, please sign the petition on the website, and get involved if ya like. Don't see yourself out of money if you can't give (I'll probably be going to London until I'm grey and old, and so will my daughter if she has EDS, sadly... You can donate at any time in the next ten years, if you still want to) -So please don't donate now if you can't afford to. You can simply sign the #EDS4IRE petition and follow on social media and that would be amazing. 

www.eds4ire.ie 

#EDS4IRE social media pages:
Facebook 
Instagram 
Twitter 
YouTube 

As I said, any money donated here will be used directly for my medical fund (private here in Ireland when doable, UK, and possibly other countries if the need arises), and possibly braces/ if I have issues with my wheelchair or other mobility aids that need fixing. I'll update as regularly as I can when funds are used for anything in particular.

Thanks for reading!

Kitty x