If you suffer with Ehlers Danlos Syndrome yourself or knows someone who does, you’ll probably be wondering why I’m still uploading this when it was EDS Awareness Month last month. Truthfully, I’m running a little behind on posting my blogposts being the first answer, and the second answer being that I don’t agree that EDS should only have awareness raised during the month of May. EDS is a incredibly underfunded, rare, incurable condition which deserves to have awareness brought to it every day of every month of every year, don’t you agree?
As you may know if your a long term reader of my blog, I was finally diagnosed with Ehlers Danlos Syndrome (also known as EDS) in February this year after a 4 and a half year battle to get this diagnosis. it’s been a far from easy journey literally watching my body crumble to pieces before my eyes – my digestive system has gone into complete paralysis never to turn normal again, I can’t move without a joint clicking out of place and being told after being wheelchair bound for nearly 5 years it’s a big possibility I won’t walk again, it’s been a difficult illness to control. Obviously, it isn’t just this illness causing all my problems BUT EDS is one of the main/biggest illnesses in my life.
So I wanted to write this post to raise awareness for those who are struggling with this illness like myself OR those who are currently undiagnosed but think they may have EDS. As my family & I spent nearly 5 years pushing for this diagnosis, yet until we finally met with the specialist we then got some of the answers we needed. We as a family know the frustration it causes because of not knowing, the agonising pain it throws upon the patient as the days go on without the right help and hurt it causes on the patient & their family as your not getting the right support, it’s something that no one should have to go through. Therefore, by raising awareness it helps more people out there realise what EDS truly is & how it affects every patients life on a daily basis…
I’m going to do the EDS Awareness Month Challenge, answering 31 questions all to do with EDS itself and my type of EDS, so let’s get started.
- What Type Of EDS Do You Have? I have Ehlers Danlos Type 3 but I’m going under genetic testing to see if I have any other genes which fit the other types.
- When We’re You Diagnosed? I was diagnosed in February 2018.
- Comorbidities (One Or More Additional Diseases)? I have POTS, Gastroparesis, GI Dysmotility (total digestive paralysis), Hypermobility, the start of Osteoporosis & more.
- How Hypermobile Are You? Very unfortunately.
- Are You Stretchy? Yes! abnormally if I’m honest, I always used it as a party trick which I now regret.
- Mobility Aids? Obviously I’m completely wheelchair bound, have a stairlift, commodes, we had a grant for a ramp to be made outside and a wet room, banana board, grips and more.
- Pain Management? To be honest, I’m on quite a few pain killers yet they don’t even touch the sides with my pain but unfortunately because I have such bad paralysis of the colon I’m not allowed high doses of pain relief. Therefore, I’m very much left to cope on my own. I’ve tried alternative treatments and it’s just not for me. I’m currently waiting to meet the pain team.
- Surgeries? Awaiting.
- Hospital Stays? To many to even begin to count and more to come for sure.
- What Is Your Normal? My normal is a normal I wouldn’t wish on my worst enemy. That’s the only way I could possibly describe it. My normal is filled with pain, hospital appointments, never ending fatigue and the question of why? I’m just so damn thankful for the incredible support system I’ve got, as I wouldn’t be where I am today without them.
- What Is Your Flare Like? Again, I wouldn’t wish the pain of my flares upon my worst enemy. Yet, I feel like I’m in a constant flare as the pain never subsides, it’s just continued to get worse over the last 4 nearly 5 years. The only way I can possibly describe my pain is; throbbing pains, stabbing pains, burning sensations, pins & needles, smashing my head against a brick wall repeatedly, like someone is using their full force to push down on my stomach, contraction pains, wind pains, constant joint dislocation pains and the list continues on…
- What Specialists Or Types Of Doctors Do You Have? I have multiple doctors that are all part of my care team, all for totally different illnesses. Though, the consultants which help deal with my EDS are; EDS Specialist/Gastroectriologist, Neurologist, Cardiologist, Orthopaedic Specialists, Rheumatologist, Urologist, Physiotherapist, Pain Management, Councillor & others.
- Funniest EDS Story? I’ll be honest I don’t think I really have one?
- Worst Doctors Experience? Honestly, not many people know this as I don’t speak about it online as it’s possibly the hardest thing I’ve ever been through but for the first three years of my journey the children’s hospital treated me disgustingly. It’s caused me tears, anxiety & depression over the years and even now it’s still having an effect on me. But that stories for another time!
- Best Doctors Experience? I think it had to be when I transitioned over to adults and everything changed for me. I was so nervous that I’d have mini panic attacks before even going into an appointment but there was no need as EVERY consultant I have is lovely, caring and just wants what’s best for me which I’ve never had that before!
- What’s Your Support System Like? I touched on this in one of the questions above, but if it wasn’t for my family & my bestest friends I wouldn’t be where I am today. So many friends, even family turned their backs on me throughout this journey but I’m so grateful to the handful that didn’t as I wouldn’t be without them.
- Do You Think EDS Is Expensive? In the respects of that due to falling ill I’ve found a true love for makeup then yes? But in other respects then I’m not really sure? Mobility Aids & getting your house adapted is massively expensive which is why you get a grant. Unfortunately, getting a grant is one long, hard process though!
- Do You Consider Yourself Disabled? I didn’t like too at first but yes I do now. There’s no shame in being disabled, you just can’t do everything a abled bodied person can and that’s okay.
- Have You Ever Experienced Ableism? I’ve experienced it on the bus once, which since has given me the worse bus anxiety. I was shouted at infront of a bus packed of people because the bus driver allowed me on when there was three buggies already on (two were empty) and they didn’t want to move.
- Worse Part Of EDS? Knowing it won’t get better.
- One Thing EDS Has Taken From You? It’s taken away my life from me. Now some people may think I’m “over exaggerating” when I’m writing that, yet think of it from my point of view; I haven’t experienced hardly any of the normal teenage livelihood’s, I don’t get to go out as I’m normally bedbound, I’m back & forth hospital appointments and everyone my age is moving forward yet I’m stuck in the same place.
- One Thing EDS Has Given You? I’ve met so many true, brave, inspirational friends through the hospitals and I wouldn’t be where I am today without them. We understand one another’s problems as we’ve got the same illness which is a special bond that everyone needs when going through this journey.
- Something You Wish Everyone Understood? although I may look okay on the outside, I’m not on the inside. I’m always getting told how “well” I’m looking yet I wish I could just tell someone that I’m feeling rubbish and I’m in agony, but I don’t want to talk about that as I’m not defined by my illnesses. It’s just so difficult to explain.
- If Could Rid Yourself Of One EDS Symptom, Which Would It Be? my complete digestive paralysis (bowel condition), it’s possibly my worst and most painful illness which I’ve been told is incurable so I’d happily get rid of all the symptoms that come alongside it.
- One Person Your Grateful For? Is it even possible to say one person? of course I’m beyond grateful for my family but friends wise I’m SO grateful for my; Maisie Evans, Emma Webber, Lauren Barnard, Natasha Homer, Jessica-Jayde Allen, Courtney Brewer-Wren, Holly Johnson, Jade Millard & a few more.
- Scariest Part Of Your Future With EDS? knowing what’s to come, the never ending medications, surgeries, therapies, hospital appointments and living life with just being told I’ve got to be “comfortable”.
- What Are Your Health Goals? To try and get my pain sorted as much as I possibly can.
- Have You Ever Met Someone Else With EDS In Person? like I’ve mentioned above a couple of my bestest friends have got EDS, one being my Emma who came down to see me from Bristol.
- If There Was A Cure For EDS Would You Take It? If other people with EDS could also have a cure as well as me then yes of course I’d 100% take it. Yet, if it was only me that could have the cure, then no as I would never put myself before someone else’s need.
- How Do You Make Your Invisible Illnesses Visible? Obviously I’m in a wheelchair so that makes my illness pretty visible so mobility aids makes an illness visible. I mean there’s also scars, feeding tubes, surgeries, pain patches, pumps, catheters, support bandage, central lines etc but apart from that making an invisible illness visible isn’t easy. I wish it was so people understood easier but it’s just not.
- What Does Awareness Mean To You? awareness means everything! awareness is the one thing which helps get the rare illnesses out there, helps get those of you who aren’t diagnosed, diagnosed and helps get funding so more treatments can be found for those of us on this horrible journey.
5 Facts About Ehlers Danlos Syndrome?
- Ehlers Danlos Syndrome are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes.
- Ehlers Danlos are currently classified into thirteen different subtype.
- At this time, research statistics of the Ehlers Danlos Syndromes show the tot owl prevalence as 1 in 2,500 to 1,500 people.
- The journey to diagnosis is sometimes a long and convoluted one.
- The most common type of Ehlers Danlos is thought to be Hypermobile EDS.
I think I’ll leave it there for today’s post as I don’t want to overload your mind with EDS, but hey, can’t blame a girl for trying right? I really hope reading this today you’ve learnt something new which you didn’t know about EDS and learnt about how it effects myself & others lives on a daily basis.
Please help me raise awareness for this awful illness by sharing this post, wether it’s with someone you know or on any of your social media sites as it truly would mean so much. every share helps someone else out there somehow! Tweeting, Instagram Stories, Snapchatting, Facebook Sharing, it all really helps get EDS out there and our voices being heard.
If you’d like to know more yourself about EDS then click on the links below which will take you to one of the EDS charity pages where you can find out everything you need/want to know;
- Ehlers Danlos Society; https://www.ehlers-danlos.com
- Ehlers Danlos Support; https://www.ehlers-danlos.org
Thank you SO much for taking your time to read today’s post but also for your never ending support throughout my journey, your encouragement never ceases to motivate me and I appreciate it more than I can say.
Sending tons of love & hugs as always,