I went to a get together recently for support for women with hypermobility. Officially it was put out as part of the local Ehlers Danlos Foundation's events, however, there were some women there who didn't know what Ehlers Danlos was, but because of issues they had, they were directed there from another support group with an overlapping population.
As part of the event, the organizer gave an informative talk, teaching people about EDS, its symptoms, its causes, treatments for it, how it is diagnosed, and more things. One of the women there asked, and many others wanted to know as well- why does it matter to know if you actually have it, what difference does that knowledge make?
And it is a good question.
My daughter had a friend over at her house and they were talking, and this friend mentioned something about "you know how when you get up quickly, you can't see for a few seconds, sometimes longer?" and my daughter said she knows what she meant.
Hold on.
I interrupted them.
Because this is not normal. This is problematic. It is a serious issue. It is indicative of POTS, and if left untreated, can be dangerous. This happened to me the worst as a teenager. One time I was conscious but I was blacking out, I was fully aware but my vision disappeared, everything was dark, and then my legs started collapsing under me, and I almost fell down a flight of stairs (I managed, blinded, to grab the railing, and then slowly lowered myself down the stairs until I was able to call for help.) While it isn't a perfect solution, just drinking more and especially having more salt can minimize this issue.
I told my daughter's friend that what she said sounded like it could be connected to Ehlers Danlos Syndrome, which I have, and can I check if she's hypermobile? She consented, and I did the Beighton score test on her, saw that she met those criteria, then asked if she got easily injured, etc... I then called her mom, who is a friend of mine, to let her know that I suspect her daughter has Ehlers Danlos Syndrome and I suggest she get her checked out. She then told me that when her daughter was younger she used to dislocate her arms a lot. Yup.
Was I "being a Karen"? Butting my nose into other people's business? Yea, maybe. But for good reason. (Her mom is also my friend and she knows I love her and care about her and her daughter and I don't think she thought I was overstepping, but even if she wasn't a close friend I still would probably have said something.)
Is it actually important to know you have EDS?
Yes. Absolutely.
I talk a lot about Ehlers Danlos Syndrome, specifically the hypermobile kind, and teach people about it. But is it just interesting information, or does knowledge of having it make any difference to your day to day life?
So for this, I have to break it down into different parts.
1) Knowing you have Ehlers Danlos Syndrome.
2) Getting an official diagnosis.
3) Being seen by an EDS specialist.
The Importance of Knowing You Have EDS
So first off, number 1 is the absolute most important part. And it is why I raise awareness of it. I've written various posts about how Ehlers Danlos Syndrome affects various parts of the body.
If you don't know that you have EDS, there are so many potential issues that come up.
Safety Issues
I am going to start with this one because of all the reasons that matters, this reason is 10000% the absolutely most important and it is why I use my platform to increase awareness.
And of safety issues, there is one that is probably the absolute most important thing.
If you have Ehlers Danlos Syndrome, or if you even suspect you have it, or if you suspect you have "hypermobility syndrome" but not actually EDS, you must know this. And I'm putting it in bold and underlined and italics because it is vital information that can save your life.
Fluoroquinolone antibiotics can kill you, permanently disable you or exacerbate any physical disabilities you already have. Never, ever, ever take antibiotics in this class.
Medicines in this class are :
- Ciprofloxacin: Cipro, Cipro XR, Ciloxan (ophthalmic), Cetraxal (otic), Proquin XR, Ciproxin, Ciprobay, Neofloxin
- Levofloxacin: Levaquin, Quixin (ophthalmic), Iquix
- Moxifloxacin: Avelox, Vigamox (ophthalmic), Moxeza (ophthalmic)
- Ofloxacin: Floxin, Ocuflox (ophthalmic)
- Delafloxacin: Baxdela
- Gemifloxacin: Factive
- Norfloxacin: Noroxin
- Nalidixic Acid: NegGram
- Sparfloxacin: Zagam
In people with connective tissue disorders, these medications can cause burst aortic aneurysms and aortic dissections, in which your aorta tears or ruptures, and this can often be fatal.
Even if you don't have Ehlers Danlos Syndrome, but just something similar, like hypermobility disorder (just the hypermobile parts but without the other symptoms necessary for an EDS diagnosis), you have a connective tissue disorder, and these meds are just as problematic. (I'm just saying EDS in the rest of this post but know it all applies to everyone with connective tissue disorders.)
The risk of taking these medications are not just death.
These medications can also permanently disable you because they are known to
- Cause tendon rupture especially the Achiles tendon, in the shoulders, arms, and hands. This is a well known side effect of this medication class even in the regular population, and when someone has a connective tissue disorder that already weakens tendons, this makes it much more likely. This can cause permanent disabilities in people with EDS.
- Cause joint degradation. EDS on its own causes joint degradation as it is from all the dislocations and subluxations. These medications exacerbate the issue and can cause even more of this irreversible damage.
- Cause permanent pain. Even in the absense of a tendon rupture or joint degradation, these medications can cause persistent muscle pain, joint pain, and other permanent chronic musculoskeletal issues
- Cause permanent nerve damage. This is a known side effect of these medications even in people without EDS, but people with connective tissue disorders are already more susceptible to these issues, making the risk even higher.
I hope I made it clear enough why you should never, ever, ever take this class of antibiotics, and if this is the only thing you take away from this post, I did my job.
And now to the rest of the safety issues.
Other safety issues.
Certain types of EDS, even without these medications, can lead to life threatening emergencies and cause a lowered life expectancy for people with it, specifically Vascular EDS (VEDS). With proper treatment, you can live a long and healthy life, but to get the proper treatment, you need to be aware you have it.
When someone is hypermobile and they do things to "stretch more" or what is referred to as "parlor tricks" to show off their "double jointed-ness" each time they do that it damages the joints and can lead to more issues down the line. For this reason, those doing things like acrobatics, gymnastics, dance, etc... need to be very careful not too hyperextend if they have EDS, because even if it doesn't hurt now, it is still causing damage that you'll feel when older. This is something I need to remind my hypermobile athletic daughter of regularly. No trying to "make yourself more flexible".
As I mentioned above, POTS untreated can cause you to get injured if you pass out when you're in a dangerous situation.
Pregnancy has many more risks when someone has Ehlers Danlos Syndrome. I read this study specifically on the
risks associated with pregnancy and childbirth in people with HEDS and the statistics were eye opening and shocking to me. Additionally, each pregnancy causes progressive and permanent degradation of your body with EDS. (My 3rd pregnancy is when my bigger EDS symptoms first appeared.) This doesn't mean that if you have EDS you shouldn't have kids (though some who suffer so much opt not to have biological kids because they don't want to make their kids suffer as they are), but you should go into pregnancy aware of the risks and factor that in to your family size, etc... and health care during and after your pregnancies.
My son has a friend who likes to go to the gym to work out, but because he's probably unaware of the fact that he likely has EDS (I've never discussed this with him but my son has told me that he sees this guy's shoulders dislocate often when weight lifting) he probably thinks he should just "man up and tough it out and push his joints back in" each time he dislocates. This is causing permanent life long joint damage to this kid who is just 18 because he doesn't realize how problematic and "not normal" it is for joints to dislocate like that.
We have a mandatory draft where we live and though my oldest son has no obvious health issues, because of my EDS the army sent him to get tested for it, and we discovered that he does have a connective tissue disorder. The professional said that even if he has no pain now, if he were put in a combat role in the army he could likely get permanently disabled (and not from actual combat situations, just the physical stress on the body). She has had patients that were in his situation, perfectly healthy before the army and permanently disabled after the army. So despite being very healthy and pain free, he got an exemption from combat based on her paperwork.
People with Hypermobile EDS have a higher likelihood of having osteoporosis and osteopenia and at a young age. Getting checked out for this already from when young and getting routine follow ups can allow for early care and prevent further issues from developing.
Other Reasons It Is Important To Know You Have EDS
Treatment.
As I mentioned above,
so many different parts of the body are affected by EDS and if you're having an issue with any of those parts of the body, you might not be getting the right treatment if you don't know you have EDS. EDS is not so well known so many doctors wouldn't even begin to know what to look for and you might either get no treatment because they can't figure out a cause, ineffective treatment, or potentially harmful "treatment" because what they're doing is contraindicated for EDS. And for things that are degenerative but treatable if caught in time, going to a non EDS informed doctor can cause issues.
I know people with chronic pain who have gone to physical therapy and they say that they just end up in more pain afterwards, so they are afraid of physical therapy. Knowledge that their chronic pain is being caused by EDS can lead them to find physical therapists that are trained to work with EDS who can actually help them. Physical therapy that is not EDS informed can cause not only pain but possibly permanent damage. This also applies to chiropracters, hydrotherapists, and masseuses who also need to be EDS trained to be able to properly treat someone with EDS.
Proper physical therapy and hydrotherapy for people with EDS can cause reversal of pain and fewer injuries leading to a better quality of life.
Emotional
There is a big emotional component to chronic pain, repeat injuries, etc. It's easy to guilt yourself for "being irresponsible" and "letting yourself get injured". That if only you did xyz, that wouldn't happen.
When you are in pain from things that don't seem like they should cause injury, it is easy to be hard on yourself for "making a big deal out of nothing", gaslighting yourself, not to mention gaslighting from others.
Knowing you have this issue allows for self forgiveness and emotional strength so you don't call into this emotional trap.
So this is all with just knowing on your own that you have EDS. But what about getting things official?
Importance of Official Diagnoses of EDS
Getting an official diagnosis of EDS definitely is helpful, but just the self knowledge that you likely have it and the safety things to keep in mind is most important of all. If you just have that, its already a huge step.
If you have an official diagnosis, it can go in your medical paperwork, and many doctors will take you more seriously and look into other issues only if you have an official diagnosis, more than if you simply told them that you suspect that you have it.
This can also be very beneficial for insurance, who won't want to pay for different tests you should have unless you had a diagnosis.
Having an official diagnosis will give you paperwork which you can use to apply for disability.
The army wouldn't have taken anything seriously regarding EDS in our family unless I had an official diagnosis.
Importance of Going To an EDS Expert
This, honestly, was the least important step of all, but still was helpful.
Getting an appointment with the one EDS expert in my country was a headache. It also was very expensive. So for a long time I didn't. And that was fine.
I have one kid that I wasn't sure if she had EDS because she's the least flexible of my kids and I didn't think she fit the criteria for diagnosis of hypermobile EDS. But when she was dealing with chronic joint pain and rheumatologists and endocrinologists were unsure why she was in pain (and suggested it might be psychosomatic) I wanted to see if maybe I had a different type of EDS that wasn't HEDS, because you can have EDS without the hypermobile joints. If I did, then she probably would have the same and it would have explained the pain.
I knew that if I wanted genetic testing for EDS to see if I had those types, insurance would only pay for it if the expert recommended it. It turns out that I don't have those other types, but at least I was able to rule it out. (It still might be that she has hypermobile EDS.)
The EDS expert recommended me names of specific doctors and practitioners who are EDS informed that could help me with my specific issues.
I thought I knew a lot about EDS but I walked away with more knowledge about how to deal with my POTS and it has been life changing.
She gave me a referral for this hypermobility rehab program. Unfortunately, my insurance company so far refused to pay for it, but I appealed it and they said no, and then I asked some higher ups to help me appeal it again and I am still waiting for an answer and I haven't given up yet on it... but if they say no, I may switch insurance companies to another one I know that has paid for my friend. But if I hadn't gotten the referral from her, I doubt there would be any chance it would be approved.
She was able to figure out that my son had a collagen defect disorder when most people would just see a healthy kid and move on, which meant that he was able to get it on record and be exempt from combat roles.
I also got a list of follow up testing to do based on what she learned about me/saw in my body in our 3 hour appointment. Because the expert in this recommended these tests, my insurance was willing to pay for them. (Specific doctors and programs is what they don't want to pay for, because they want me to go to something through my HMO but this doesnt exist on my HMO.)
Lastly, because of POTS I get symptoms of dehydration (especially dizziness) easily, even if I am drinking amounts that other people would be fine drinking. So when I'm sick and can't drink as much or am losing fluids other ways, I get dizzier than most would.
When I went to the emergency doctor on shift at our clinic on off hours when I was sick telling him I'm dehydrated because I haven't been able to drink enough and asked for an IV, he said that I didn't look dehydrated to him and my blood pressure wasn't indicating dehydration, and unless he can test my pee and sees via my urine that I'm dehydrated he won't let me have fluids. I tried arguing with him that it can't hurt but he refused to allow it.
After that happened, I went to my doctor who then put in my chart that the expert in my condition said that I need to drink 2-3 liters a day, and if I am unable to drink that much, I need to get intravenous fluids, without any further testing. So far I haven't had to test that, but I am pretty sure that with that in my file at the clinic, I'd actually be able to get the treatment I need. But specifically because it was the expert that gave that recommendation.
So How Important Is It?
Knowing you have EDS?
Vital. Can be life or death at worst or prevent life long hardship and pain.
As you can see, this is absolutely imperative. If you even suspect you have it you should make sure not to do the things that can risk your life and your health. This is why I absolutely will tell people if I see or hear stuff about them that makes me suspect they have EDS, because it can save their life. And that knowledge can only help you and enable to you preserve your long term health. (And that is why I keep on talking and talking about it here, even if some people have left negative comments that that's all I seem to be talking about, because saving one life is like saving an entire world.)
Getting an official diagnosis?
Less vital, but still important.
Having an official diagnosis on record will help you also with getting proper treatment and testing, as well as help with anything official, such as beaurocratic things, such as government, insurance, legal things, etc.
Going to an EDS Expert?
Helpful, but not required.
As you can see, there are lots of benefits of getting examined and treated by an EDS expert, as it helps even more with beaurocratic things, and you can learn more and get even more tailored advice based on your issues.
However, since it can be challenging logistically to get to such a specialist, either because of availability, distance, waiting times, or costs, don't beat yourself up if you can't manage to. Just having done the previous two already will make your life a lot better. And if, at some point, you can go to an EDS expert, then do so. But if you can't, it's fine.
Ok, this was a bit of a doozy of a post. I'm not usually doom and gloom, and I think this is the only time I've ever written something so huge in a post, but I needed to make sure it wasn't missed. Do you have EDS or have a close family member with EDS? How about hypermobility or just "double jointed-ness"? If so, have you heard about any of these health issues regarding these medications? Have you ever taken them?
If you don't think you have EDS and someone came up to you and said "I think you might have this and it's worth getting checked out because of XYZ" would you be upset or appreciative?
If you think you have EDS, have you gotten an official diagnosis? Been to an expert?
Do you agree with my assessment of the importance?
