Ehlers-Danlos Q&A

Updated: Feb 4, 2019

I thought it would be rather nifty to include some of my pals in a blog post, while also helping to spread awareness of Ehlers-Danlos syndrome. If you would like to write a similar blog post, go ask your friends to join in by thinking up some questions to ask you, and we'll publish it here!



Through the years I've been diagnosed with several health issues, including cancer, and so I know as things haven't been as linear as they probably should be (my diagnoses journey has actually been really and truly all over the place), that perhaps things can get mixed up. I explain symptoms and issues  of course, but my conditions (especially EDS) can seem so broad, vague and I'm sure confusing to loved ones.

As time has progressed I'm unfortunately unable to spend as much time with friends as I wish. I told some friends that they could ask me any question about EDS -particular to my case or just in general, something maybe they have always wanted to know or were afraid to ask, or just simply never had the opportunity to ask. No silly questions. Although silly questions are also welcomed -haha, funny is also good!

So here is post one of my friends corner: Ehlers-Danlos Q&A. These are some of the people who made me who I am... Please don't judge me too harshly based on them -I can't get out enough to make new ones 😛

Tasha

I met this hot mess around 2010 through mutual friends, and our friendship has remained strong since -mostly based on the fact that we are both absolute (hot) messes, non-deliberately anti-social weirdos who hate sunlight and love naps. I.E. we both live in the realm of chronic illness and as a result, have less contact with the outside world than either of us would like. But the interstnetz and phone calls have helped keep the magic alive!

She stars with me in this most epic video of all time:

Her kids think I'm really, really cool (so we can just mark that down as fact, as they're teens and they know cool when they see it...  No, no, you don't need to ask them, they're eh, busy at the min. So just take my word on this one. Mark that shit down).

Q. What's the best thing friends and family can do to help you?

The main thing I request from friends and family is understanding. Which sounds basic in itself, but it really isn't. My condition is technically seen as non-progressive, but due to general age issues, and not receiving medical help that I need when I need it -Things are getting worse, my condition may continuing deteriorating. Each day is also different -one day I can walk, another day I can't. One day I can walk around town, do some cleaning, play with the dogs, and the next day I can barely move. I think most friends and family and even acquaintances understand my life under those conditions. They get used to those limitations. And until recently I could leave the house and travel in a car once, maybe twice a week.

But I think it's harder for people to understand progression of illnesses. I'm now at a stage that travelling is agony. And while I am in the process of putting things in place to make travel less painful, I still won't be able to visit friends weekly. And that's just that. But sudden changes are, and will, be hard for people to deal with. You get used to a friend being one way, it takes time but you get used to it -then everything changes, their illness progresses, you're probably a bit annoyed (at the illness, not them), frightened, confused. But stop and think. There is nothing they can do to change certain circumstances. It's harder for them -a million times over.

But your unwell friend or family member will understand you are finding it hard to cope with such changes. Talk to them -or sometimes even better, talk to a mutual friend who seems to be dealing with it well.

Secondly, I just want friends and family to know the basics of my condition(s). Nothing fancy, nothing overly medical, but the raw basics. Ehlers-Danlos syndrome and dysautonomia are hella confusing and complex, I know that. I don't know everything, I'm still learning every day. But if I have to repeat the very, very basic stuff, it really is tiring. Read up on the main EDS websites, or look for a YouTube video. If you are lost, ask me (or your unwell loved one) for a couple of links -I would be happy to oblige, and most disabled people would feel the same way. 

Q. Is there any "helpful" things you wish they wouldn't say or do? 

Sometimes hearing "get well soon" makes me giggle... I'm never getting well, lol, that's kind of the point. I try to give the benefit of the doubt, I think they mean maybe my current pain (if it's a bad shoulder day, for example). The old wives tales of turmeric, lemon juice, and a whole assortment of foods to eat, baste yourself in and stick up your ass, is EXTREMELY eye-rolly. Healthy people try all sorts of crazy shit. Prayer, fairy wishes, etc. I just ignore it. People mean well, but I would be lying if I said it wasn't annoying and silly and sometimes ridiculously condescending. But people are desperate and will place hope on anything -especially healthy people. Mostly people in my life are pretty cool though, and if they said anything silly I know we could laugh about it.


Breanainn


Breanainn is Tasha's partner in crime, although I met him a couple of years before I met Tasha (maybe 2007/ 2008?). We lost contact, only saw each other randomly throughout the years, until himself and Tasha became close.

He's also a fellow spoonie/ disabled person, so we have many a laugh over that. We are super annoying to be around in small cafes -me with the rollator, him in the wheelchair. We take up all the space. So being in the way and annoying is kind of our thing. We are a complex and diverse bunch! And in case you're wondering, as I'm sure you are -I'd totally win in a cripple race. On that note, I realised that we have like zero photos together. Sick recluses are terrible at getting photos together apparently! However, I do have ones that I took of him, as you'll see from above.


Q. Are there any celebrities with EDS, That could help out with awareness?

Cherylee Houston is the one that first springs to mind. She plays Izzy in Coronation Street, and is also the patron of Ehlers-Danlos UK.

Other than that I've heard only hearsay really about other famous people. The thing with any hypermobility condition is that not everyone has it to the same extent -some people are flexible but rarely dislocate! So they might be only in moderate pain and never think anything of it -But other people with EDS may notice it for them. Plenty of people are also double jointed and have absolutely no pain or issues. It's important to see EDS hypermobility type on a broad spectrum, but it's also important to note that not all people who are hypermobile have an illness.

There has also been speculation about historic people such as Anne Frank and Abraham Lincoln having either EDS, Marfan's syndrome or something closely linked.

Cherylee Houston


Sarah


Q. How do your illnesses effect pregnancy and child birth?

With trying to conceive, there seems to be a slight increase in miscarriages for Ehlers-Danlos patients when compared to the general population, as skin issues such as fragility can also occur inside the body.

However, the type and severity of complications really depends on what type of EDS the patient has -vascular EDS tends to present with far more likelihood of severe problems. I'm waiting on testing to rule out both vascular type and classical type, but I'm pretty confident that I have hypermobility type, or some form of hypermobilty spectrum disorder -criteria change came into place this year which has complicated previous diagnoses. So hopefully both London and genetic testing can clear up which condition or sub-type I do have. Here's some further information on EDS types.

The main issue with Ehlers-Danlos syndrome in pregnancy is the obvious one -that with such sudden, extra weight, I (or any sufferer) may be prone to dislocations even more frequently than usual.

For me individually, due to hip dysplasia/ shallow hip socket, I will more than likely require a C section. I'm perfectly happy with this. However, many people with EDS have issues with anaesthetic not working the way it should. Some people need extra at the dentists, hospital procedures and of course that includes epidural during childbirth. I'm not 100% sure why, I guess faulty collagen doesn't play by normal rules when it comes to anything. Luckily I've only had this inability to be sedated occur once in my life so far... But I imagine epidural failing during a C section is the very worst time that this can happen. I've heard of some women needing complete knocking out due to epidural failure. So that is something that I will need to stress to my doctors at the time.

Another possible problem with C section -People with EDS can take longer to heal after surgeries (my biopsy scar took longer than it should), we scar more easily (like that tiny scrape I got on my neck when I was eight that is still present) and our scars can burst open (like the mess on my leg), and of course this can't be great for such large scars. As I said above, skin fragility is common with EDS patients. If you have Chiari Malformation this also brings about possible complications during birth.

Many people with forms of EDS or HSD have mentioned that they felt their pain became worse after pregnancy/ giving birth. I'm not sure if this is down to a natural decline or if it's directly linked to pregnancy in other ways. Nine months is a long time, I know that my issues have all worsened over less time frames and naturally during pregnancy patients are less active. So I suppose it may be a mixture of all those elements combined. However, other people don't feel a noticeable increase in their pain and symptoms -it's very much a wait and see situation, that no one can predict.

My personal main concern in preparin