Many Faces of EDS Capture Attention in May

I am the Face of Ehlers-Danlos Syndrome! In May 2013, many faces of EDSers are being revealed along with the struggles they endure in daily life. 

Face of EDS“May is Ehlers Danlo’s Syndrome awareness month. Just like Breast cancer and prostate cancer and Diabetes has one. Actually, most diseases have an ‘awareness month’ And EDS and ‘rare’ diseases has a month as well, and May is EDS’s month. So for you who don’t know.. Breast cancer has a pink ribbon, prostate cancer has blue, EDS has zebra printed. So, If you wan … Show your support to the people you know with this invisible disease weather it’s the Classic type, the Hypermobility type, the vascular type or any of the other types.  Go Zebra! And believe it or not. Most of you out there have met people with EDS out there, most of them don’t even know it though. most of them live with all these odd symptoms. Are shipped from doctor to doctor. Specialist to specialist. Are called lazy, weak, ”there’s always something wrong with you”. unexplainable pains in the entire body, dislocations, strange skin and no one can explain why.

EDS is an invisible disease. A lot of people has told me ‘But you don’t look sick’. Well … A lot of diseases doesn’t show on the outside, diabetes for example. But that doesn’t mean it’s not there, does it? EDS is so much more than being hypermobile. (For me, I have the Hypermobility type) It effects everything in my body really. About a week ago I decided to write a list (I was bored). I wanted to write down all my symptoms on a paper. It turned out to be a lot of them and all of them can’t always be found on Google or regular pages about EDS. They just cover the basic symptoms. So I thought I’d write them down. Thanks to the ‘Ehlers Danlos syndrome awareness page’ I’ve learned a lot about myself that my EDS team at the hospital hasn’t. On this Facebook page people all over the world come together and talk about this life dominating disease. So here it is:

  • Hypermobile joints
  • Dislocations (especially knees)
  • Chronic Subluxations (Left shoulder and left wrist)
  • Sprains
  • Muscle Inflammations
  • Chronic fatigue
  • Chronic pain in general
  • Spontaneous pain anywhere and everywhere
  • Misalignment in my feet
  • Knock-kneed because of my feet
  • Cracks in my joints
  • Slow healing
  • Bruise very easily
  • Balance Problems
  • Brain fog
  • If I walk next to a person i tend to walk into that person without knowing. As if that person is a magnet
  • Respond badly to painkillers
  • Frail nails and hair
  • I walk into things I know are there. I think I’m further away than I really am.
  • Stretchhy skin
  • I get tired and exhausted QUICKLY
  • Fragile. Something that is not hard or heavy for a normal person can injure me badly

An indirect problem these symptoms give me is… well.. problems! Doing anything really. I can’t work with anything I want, and No.. ‘You can do whatever you want, if you REALLY want to’ Doesn’t always work in my case, or anyone with EDS,. Heavy lifting or repetitive jobs can and will injure us badly. I have an official disability. My doctor ‘sent it out’ for me to the employment service for example. So they can’t force me to do anything. I have a ‘code’ in my papers. :P  I try to do what I can though. But some days just getting dressed is a problem.

Anyway, these are the problems I have right now. I’m still young but things has escalated the past years for the worse and I will never get any better, only worse. And if I every get  pregnant, they will have to hold me under close observation because first of all.. most people, as far as I know, with EDS give birth too early. The current symptoms I normally have will probably get a lot worse. And there are other complications such as a lot of bleeding, and in general problems. But I don’t know that, since I’ve never been pregnant. Only time will tell. :)  Otherwise, I live a “normal” life. As normal as it can get. :)  I can’t really work out except what my physiotherapist has told me to do, and even that training hurts me. But I walk a lot, and running works. I HATE working out and running though. Which is bad. But yeah, I live a normal life. Some days I can’t change bed sheets alone and need help. It depends on the day really. But like I’ve said before, what everyone with EDS need the most, in my opinion, is support from loved ones and friends. And even more important, understanding! We need people around us to KNOW what we have. And not just. ”She’s super agile”. We need understanding. We need the people around us to really understand that we can’t do everything ‘normal’ people can. Just putting on shoes can be hard sometimes. Or do laundry. Or… move a table. Things you might find ‘silly’, can injure us. And we need people around us to know that we’re in pain. At least I am. Almost 24/7. EDS is not a disease that is there from time to time, it’s there all the time. Every second of the day, it’s who we are and based on how bad our EDS is, it sort of decides what we can and can’t do. So if you know someone with EDS. A loved one, a friend. The best thing you can do is to talk to that person. Really get to know that person AND her/his disease. What’s their major problems. What should they avoid and not, and remember. Remember and understand. But don’t treat us like invalids. :)  We can do a lot of things, but maybe it takes a little more time and We have to be very careful. So.. Understanding, respect and…. remember. If someone with EDS says: ”I can’t do that.. I can’t help you with that” It means forever.. It doesn’t mean ”I can’t help you with that ‘right now’”. Offer to help carry things. Don’t let us lift heavy things. :)

I know I’ve mentioned this before But I think it’s important. Not only with me, but for everyone with EDS. More people than we 185814_364824086920136_1155256444_n know suffer from EDS. And a LOT of the people with EDS are misdiagnosed with Fibromyalgia. Apparently, a lot of doctors in America are very fast on diagnosing people with EDS with Fibromyalgia, which is a different thing. And remember.. You might have to teach your doctor about EDS. It’s a rare disease and very few doctors know what it is. If you as much as suspect you have EDS. Print out papers, info from blogs. Everything you can find. Read through, show your doctor. Tell him about your problems and how they fit together with EDS. Getting a diagnose won’t cure you because there are no cure to EDS. BUT… It might give you some peace of mind. It will give you an answer to why you’ve been a certain way for all your life. It might explain why you are the way you are and that you’re not imagining or are lazy or just.. weak. Even though you won’t get cured, some peace of mind is a lot worth with this diagnose.

I’m done for tonight. Sleep well everybody out there, and for all of you with EDS, no matter where you are. You are not alone! Just write if you feel like taking or visit Ehlers Danlos Syndrome awareness page on Facebook.

There’s more of us out there.

If there is an EDSer in your life … be there for them … particularly during this month of May EDS Awareness.

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