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Ehlers-Danlos Syndrome Linked to Small-Fiber Neuropathy

This is Dr Charles Argoff, professor of neurology at Albany Medical College and director of the Comprehensive Pain Center at Albany Medical Center in Albany, New York.

Recently, we’ve seen several individuals at our center who have Ehlers-Danlos syndrome (EDS), a known connective tissue disorder associated with, among other things, hyperelasticity. Although there are several types of EDS, that’s not the focus of today’s blog post.

People have been referred to us who have severe and chronic pain of uncertain etiology. Although it’s been well documented that people with EDS do experience chronic pain of varying quality, other conditions, fatigue, and pain- and fatigue-related disability, overall this syndrome has been poorly understood.

Uncovering a New Link in EDS

We saw a 47-year-old gentleman who had been experiencing severe headaches and abdominal pain for almost a decade. In fact, he stopped working in his profession because it became unbearable. Nevertheless, he participated in his life activities as a parent and spouse, but was very much looking for a solution or a reduction in his pain. He had previously been evaluated at multiple other specialty centers outside of the Albany area, as well as locally. We went through several steps to evaluate him, and did what we could before deciding that we wanted to probe deeper into what might be causing some of his more generalized pain.

We also recently saw an 18-year-old female with EDS who at one point during her high school years couldn’t function because of her chronic widespread pain. She was quite disturbed by the lack of ability of anyone to figure out why she was experiencing pain. That is understandable, given that this 18-year-old wasn’t able to function in a normal manner.

In each of these individuals, we elected to carry out diagnostic 3-mm skin punch biopsies. This actually wound up confirming a diagnosis of small-fiber neuropathy in both patients, on the basis of the reduction of intraepidermal nerve fiber densities that were established. We thought this was quite interesting, and so we went to “write it up.” Of course, we found we were not the only ones to have recently identified this.

So the real purpose of this blog post is to highlight to others who might be seeing patients with EDS the presence of small-fiber neuropathy in these individuals.

Mounting Evidence in the Literature

Recent published evidence of this in the peer-reviewed literature is found in a 2016 case report by Pascarella and colleagues[1] in Clinical Neurophysiology. The authors noted that chronic pain, fatigue, headache, and dysautonomia had been previously reported to be important symptoms in individuals with EDS.

They saw a 41-year-old male with burning feet as well as chronic fatigue, who also had a history of postprandial abdominal discomfort, constipation, gastroesophageal reflux, headache, and fatigue. They performed routine electrophysiologic studies looking for large-fiber neuropathy, which was not present. They then elected to perform 3-mm skin punch biopsies at multiple locations.

The investigators found evidence for a non–length-dependent small-fiber neuropathic process. Findings consistent with intraepidermal nerve fiber density reduction were seen in the thigh, but not in the distal lower extremity.

In a second just-published study in the journal Neurology, Cazzato and colleagues[2] reported on a series of patients with EDS who underwent clinical nerve physiologic assessment as well as skin biopsy assessment. In addition, their sensory symptoms were recorded to determine whether or not they had neuropathic features according to the Douleur Neuropathique 4 (DN4) [instrument], a very quick and very easy, relatively sensitive, and specific questionnaire that can be used to help identify whether a person’s pain is neuropathic or not.

Skin biopsies in this analysis were performed at the distal leg, and intraepidermal nerve fiber density testing was also performed. Patients were, of course, compared with sex- and age-matched normal control databases.

Twenty adults in this study had typical hypermobility EDS, three had vascular EDS, and one had classic EDS. Upon evaluation, it was found that all but one patient had neuropathic pain complaints according to the DN4. Pain intensity was moderate in eight patients and severe in 11 patients. Sural nerve conduction studies, which are used for large-fiber testing, were normal in all 24 patients. All patients showed a decrease in intraepidermal nerve fiber density consistent with the diagnosis of small-fiber neuropathy, regardless of the type of EDS they had.

In conclusion, this is fascinating, because here is a condition that many of us have seen without really understanding the underlying mechanism. Of course, knowing that the diagnosis of small-fiber neuropathy is now reported in an increasing number of published studies, and simply observed in patients with EDS, doesn’t give us all the answers. What it does tell us, though, is that this may have an impact on how we treat people. It certainly tells us that small-fiber neuropathy may be a common associated feature of EDS. It may explain many or at least some of the symptoms.

Also, it tells us that further studies are certainly needed to address these observations, so that we can eventually help people with EDS experiencing chronic pain and other symptoms that adversely affect their quality of life.

I am Dr Charles Argoff, professor of neurology at Albany Medical College and director of the Comprehensive Pain Center at Albany Medical Center. I thank you for viewing this blog post, and hope that you have enjoyed seeing it.


20 Things I Learned About Ehlers-Danlos Syndrome Before I Turned 20

I’m about to enter my third decade of life. That’s sort of a confusing way to say that I’m turning 20 in less than two weeks. So what are 20 things I’ve learned about chronic illness, experiences I’ve had, things I wish I could say, things I wish people knew, or things that get me through?

1. This is not my fault.

I did not choose this life. And never would I ever have stood up like Katniss did and yelled, “I volunteer!” if someone had offered it to me. Don’t take that the wrong way, though… Just because I didn’t choose it or volunteer for it, it doesn’t mean that I haven’t come to appreciate this life I’ve been given. But I didn’t ask for this. I didn’t pop my knuckles too much, or drink too much Diet Coke as a kid and develop a genetic chronic illness. I have to stop trying to blame myself for my chromosomes. But if we want to get technical, it’s really my parents’ fault… Just kidding, Mom and Dad.

2. I am not alone (and neither are you).

If you’re reading this then that means that you’re searching… searching for advice, support, or just the sheer knowledge and comfort that you’re not the only one who struggles. This leads me to number three.

3. Chronic illness and invisible illness can make you feel alone in a world with billions of people.

Even the people closest to you sometimes can’t make sense of it all… the random fatigue, the cracks and pops, the depression or anxiety that is caused by your chemical and biological makeup that you have no real control over. No matter how many times I tell my heart not to race and send adrenaline freely overflowing every time I stand up, it just still seems to not understand. And most of the time other people don’t understand either. That’s a very lonely feeling. That’s probably one of the things I’ve struggled with the most. But I know a few people who have Ehlers-Danlos syndrome and similar chronic illnesses and I have this site and it helps you remember that there are so many people like you that feel immensely similar.

4. No, there isn’t a cure, but that doesn’t mean give up.

Hearing that there is “no cure” and that “you’ll be combating this for the rest of your life” can be one of the most devastating things to hear. It can just make you want to give up. But you can’t. You know why not? Because then the illness wins. And though it may be difficult and extremely bleak, you have to push on.

5. Life will be different but that doesn’t mean your life has to be over.

What do you do when you’re a high schooler who has been told this disease will be with you forever? What does that mean for the picture of your life you had? Will I ever be able to function properly again? Will I ever be able to live on my own? Or finish high school? Or go to college?

Trying to figure out how your life is going to look is kind of like tie-dyeing a shirt at home. You think it’s going to look just like the picture on the front. And you tie-dye the shirt, you let it soak in, you rinse it out, you let it dry. I don’t know about you but whenever I’ve tie-dyed it has never looked as “perfect” as the one on the cover, but it still looks cool and sometimes turns out even cooler… and it’s unique, you’ve made it your own. That’s kind of how life shifts when you get diagnosed with a chronic illness. And just as a spoiler… I did finish high school, I do live on my own (with two really cute cats) and I’m a full-time student in college. It’s not exactly how I envisioned things. Actually, it’s nothing like I saw it. But it’s OK, it’s almost cooler and I definitely made it my own.

6. Listen to your body.

Try to take inventory of how you feel your best and worst and in between. Then listen to your body when it tries to tell you things. If you’re feeling dehydrated take extra measures to combat that, if you’re having a flare up take it easy.

7. Sometimes you shouldn’t listen to your head.

I would bet $1 ( and only $1 because I’m a broke college student) that your head sometimes tells you that you can’t do something because of your chronic illness that you actually can (and should) do. Sometimes you just have to tell your head to shut up. And sometimes your head says “OK go harder” during a workout even when you’ve reached your limit. Once again, you should probably ignore that “go harder” advice… you probably will regret it the next day.

8. The power of “No.”

Wow is this a big lesson that I’ve had to learn. It’s OK to say no to that lunch invitation, or that invitation for a hike that’s just too much, or that extra project. It’s OK to say no to 18 credit hours — trust me, it’s really OK.

9. There is power in saying no and not trying to explain yourself.

You don’t always owe people an explanation, even though it may feel like it. You don’t need to explain to a stranger or even your closest friend that you don’t want to do something, or you can’t because of your disease, etc. It’s sometimes OK to decline without feeling like you have to go into great detail.

10. Treat yo’ self.

Did you get out of bed on your most painful days? Treat yo’ self. Did you ace that test? Treat yo’ self. Remember to treat yourself even if the victory seems small or insignificant. Positive reinforcement can be effective.

11. Have a “someone.”

For me, my someone is my mom. She knows probably more than I do about EDS. She’s done extensive amounts of research to try to understand. She’s seen me sob many times because of my illness. But she also encourages me to do what I can and to not lose heart. So that being said, she’s also seen me get my diploma, and have some great successes. I kid you not, I would not be here without having my someone. Find someone and really inform them, let them in, lean on them, be brutally honest about how you feel, mourn with them, celebrate victories with them, live this chronic-illness life with them.

12. Set realistic goals.

You probably can’t run a marathon without any training. I don’t think I could… even with a lot of training. Maybe your goal is to go to class all week even if you don’t feel your best. Maybe it’s to rest when you need to. Maybe it’s to go out and be social once this week. Don’t set a goal like losing 20 pounds in two weeks or anything unrealistic like that because it will most likely let you down.

13. Be honest about your goals.

Are they unrealistic? If so, see number 12.

14. Be upfront.

Let the people you’ll be around or that you’re committed to working with or living with, etc. about your illness, and help to educate them… They can’t be supportive or compassionate or understanding if they have no idea what you’re going through.

15. At the end of every flare-up is some sweet sweet relief, if only for a moment.

16. Pick some songs that instantly put you in a good mood and have them ready to go when you start to feel down about your chronic illness.

Music can be so so so therapeutic (and distracting, if you can’t get pain off of your mind).

17. Everyone’s experience with chronic illness, invisible illness, and disease is different.

Yes, you may have the same disease, but they might not experience things to the degree you do and vice versa. Everyone deals with things differently, and people’e symptoms aren’t always the same. That being said…

18. Don’t try to compare or compete when it comes to chronic illness.

I’ve come into contact with people who seem to want to keep some kind of sickness score. Please don’t try to tell me that your experience is worse or drag me down into your pity party just because we both have the same disease. It’s not a competition of whose experience is harder. They both are hard. Respect other people’s experiences and realize that it’s different so they can’t really be accurately compared.

19. It’s OK to be sad and have hard days. Be kind to yourself. 

I think that one just speaks for itself.

20. You are not your illness. You are you. And you are great.

I am not my illness. I am not my illness. I am not my illness. My illness doesn’t define me. My illness doesn’t define me. My illness doesn’t define me. C’mon, everyone together…

This is another hard hard lesson to grasp. It kind of has that Teflon quality. It just doesn’t stick. If I’m not careful I can slip back into this mindset where my illness is all that I am. But that’s wrong. Just continue to remind yourself every time your mind starts to go there. Repeat it over and over again if that’s what it takes.

My illness will no longer destine me, confine me, or define me.

So there you have it… 20 things I learned about chronic illness before I turned 20. I hope that maybe you can relate, or that maybe it helps you through your journey.




2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis

Ehlers-Danlos syndrome is widely known for the chronic dislocations and subluxations as well as chronic pain. People hear that first part, but unless you’re experiencing it firsthand, no one really thinks about the snowball of symptoms that comes with simple instability. When your tendons and ligaments aren’t doing their jobs, something has to in place of them. I mean, you’re still standing, right? Yes! I call that the “compensation pain.” It is chronic and I also refer to it as the baseline pain. Ehlers-Danlos people experience many different types of pain, and usually all at once.

Compensation pain is when your tendons and ligaments are like “shredded bubblegum” (no elasticity) so your muscles have to work way overtime just to hold your body together. Think about that pain when you’re holding something so heavy for a while and it gets uncomfortable so you want to put it down, but you can’t. You keep holding it waiting for the sweet relief of dropping the weight but you can’t just quit yet. You start shaking and it gets a little embarrassing because you look and feel weak. The weight of this item is really wearing you down and you’re really not sure how much more you can take.

Now imagine that being your own limbs. You don’t get to just put it down. Imagine having to hold your arms in their sockets or having to stand just right so your hips don’t give out. Imagine having to physically keep your head held up and what kind of pain it is on a daily basis to have to bear the weight of your own limbs because your tendons and ligaments are on some permanent vacation. That is what this is. I physically start shaking because of how hard my muscles have to work just for me to exist. My muscles stay in knots, and those knots have knots. Ehlers-Danlos patients are fighters.

Sometimes, we relax our muscles without thinking about it. When EDSers relax, we are almost guaranteed to dislocate something. It’s quite possibly one of the trickiest invisible illnesses out here. When my muscles are working to hold me together, I can function pretty normally for the most part. I’ll use small children for this example: We physically prepare ourselves to pick up a small kid and we have no problem whatsoever doing so because we subconsciously braced ourselves, physically. We have time to really tighten our muscles to lock everything into place before we go to pick that child up and all is well, no problems. Now, it’s a few minutes later and I’m on the phone with my back to the kid while he’s playing with his friends. My guards are down, shoulders are relaxed and I’m not prepared for any physical contact. The kid runs up to me and grabs my arm and pulls with all his might. Shoulder dislocates immediately. I didn’t have a chance. My muscles were not consciously prepared to protect what my tendons and ligaments should have been there to protect involuntarily. When my muscles relax, it leaves my joints and nerves vulnerable. It is a lose-lose.

When a nerve gets hit, that’s an incredible type of pain. With Ehlers-Danlos patients, it’s just a part of our everyday life. I watch people hit nerves and scream and cry. I can’t help but wonder what it’d look like for them to spend a day in a body with EDS. Nerve pain has different feelings and sometimes the feelings are jumbled all together at once. It can feel like you’re being electrocuted or like you’re being set on fire at first, but what gets me is the pins and needles sensation, or the muscle weakness where you feel like you may collapse when you’re not even standing. When it’s really bad, you experience a limb being temporarily paralyzed. There are mornings when when I wake up and I can no longer move my arm because I slept on a dislocated shoulder on accident and a nerve got pinched. It is the scariest feeling, waiting on your arm to function again.

Those two basic types of pain are the ones I experience on a daily basis. There are many different types of pain that we go through, but those two are the ones that I would have to say consume my thoughts daily. Ehlers-Danlos syndrome no doubt is a true invisible illness. When I fight, no one knows the first thing about what is going on in my body. Hopefully this gives a little more insight for those who could never understand, and gives reassurance to those that know very well about what I am doing my best to explain right here. We are EDS strong.



Learning to Love the Skin I’m In With Ehlers-Danlos Syndrome

I’ll start out by saying I was not always comfortable or accepting of my disorder, Ehlers-Danlos syndrome, or the effects it has on my everyday life. Growing up, my family did not think there was anything specifically wrong with me, especially with it being branded as an invisible illness. I was consistently pushed to the sidelines when trying to cope and learn about the effects of Ehlers and my future with it. I was diagnosed around the age of 10 but had noticed my skin as early as the age of 7.

sara geurts modeling in red top on a balcony outside
Sara Geurts

My sagging skin was my biggest insecurity, amongst other side effects. I would later learn this was due to the rarity of my type. As I got older, my discrepancies started to show more and more. The majority of people who had noticed assumed I had gone through some type of weight flux, which resulted in my “stretchy skin.”

Again, I was not always comfortable with my Ehlers. I more often found myself hurting my body rather than helping it, both mentally and physically. Around the age of 23 I had started a relationship before fully acknowledging my disorder. My insecurities with Ehlers created a major barrier, which ultimately led the relationship to end.

This would be one of my greatest lessons ever learned. I just didn’t know it yet.

Upon serious self-evaluation, I realized my insecurities caused me to lack any confidence, which had an impact on all of my social and personal relationships. I observed that hating certain parts of myself and body triggered my unhealthy mindset, which others sensed as well. This outlook transferred into a majority of my friendships/relationships, which then made them incapable of reaching their full potential.

I promised myself from then on I was going to be true to myself, love my body, love my disorder and most importantly, love myself.

I looked to photography as a way to pursue and nurture my new mindset. After acknowledging the parts of myself I hated and shunned, my mentality slowly began to change, and the beauty within my flaws slowly began to appear. Not only did I recognize change within myself, but I started to think more and more about photography and art. How could I use my story and revelation to help others?

My cousin, Yasmin, and best friend, Briana Berglund, were the ones who really helped me (as well as other amazing close friends and family). I informed my friends and family of my decision to raise awareness for EDS and start my journey modeling with my disorder in the fashion industry. I also decided to share this with on personal social media accounts as well.

My goal is to shed light on the unhealthy mindsets we currently have within the fashion and modeling industry today. I believe the scars and discrepancies we have are reminders to the world of what we have been through as individuals. We should not be urged to “cover them up” or “remove them” but instead glorify them!

I aim to break society’s transparent barriers of perfection. Barriers that subliminally tell us all to be perfect in all aspects of life, work, social and personal interactions. “Be this skinny and you’ll be happy,” “Buy this and you’ll be happy,” “Look this way and you’ll be happy.” Really? It is the imperfection that makes us perfect and is where true beauty lies. A reminder we all need: love your body, love yourself, be gentle with your body, be gentle with yourself. We are our own real life warriors. Our bodies tell a story that no one else has, a literal vessel of the struggle we as individuals have gone through – a vessel to be praised, not shunned.

My mission is to show the world my own imperfections to aid others on the journey to self-love. Real beauty lies within ourselves. The beauty only seen on the outside doesn’t count, but what matters most is on the inside. By reinforcing the mindset that our imperfections are real and beautiful, I hope to lessen the journey and struggle of others on the road to self-love.

I hope to be an inspiration to others and open individuals’ eyes to the true beauty within themselves.

When I started my journey I knew I was struggling and knew I needed someone to help me break through. Yasmin was with me. I stated how unhappy I was, how I wanted to try to love myself and learn about my disorder – I just didn’t know where to start. Her statement to me changed my attitude. She responded, “This is what I have been waiting to hear for a very long time. Your disorder is beautiful. It’s what makes you, you. Only you can change your mindset and love yourself.” I had heard statements like this before, but for the first time ever, I didn’t doubt her.

sara guerts modeling in a black and pink bikini
Sara Geurts

This is when the Love Your Lines campaign presented itself. This campaign focuses on praising imperfections. From stretch marks to scars, from discrepancies to birthmarks – anything. It is here women are able to submit a picture of their imperfections and a story of their journey. My cousin urged me to submit mine.

On September 16, 2015, the #LoveYourLines campaign published my story on their social media page, and that is a day I’ll never forget.

It was here my vision of myself, my body and my disorder changed forever, and I can honestly say I am the happiest I have ever been in my life.

From the beautiful individuals who offered their kind words on my post to numerous women reaching out and declaring the beauty I had revealed to them, it was a spectacular experience. I felt like a whole new person. I couldn’t understand how I had hated myself, my body and my disorder for so long. With every opportunity I noticed my strength, growth and transformed perspective.

Now, more than ever, I am confident with who I am and with my disorder. I have made it my mission to raise awareness for Ehlers through photography in hopes of making an impact. I am not ashamed, nor do I try to hide it anymore. I may have a disorder, and yes, my disorder is a part of me, but I wouldn’t change it for the world. My physical discrepancies are gentle reminders of the fighter I am. My lines make me, me. Each line holds beauty, and is beautiful in its own way. No one else carries the exact lines I have, and this is what I consider to be truly beautiful.

I believe deep down that God put me on this journey for a reason. I will not stop until my voice and the voices of the EDS community are heard, and I will continue in my efforts to change society’s visions of perfection within our fashion industries in the U.S. and around the world.

I aim to be one of the first recognized models with Ehlers-Danlos.

Wear your stripes with pride, my loves. Our community may be small, but we are all here to support one another. I wish you a blessed day filled with love and many blessings. Thank you for taking the time to read my journey, and I hope to meet you all one day. #ZebraWarriorsUnite


Local Input~ Bloc Quebecois leader Gilles Duceppe answers questions from the media following a campaign stop in Montreal, April 26, 2011. Canadians will go to the polls in a federal election on May 2.  REUTERS/Christinne Muschi (CANADA - Tags: POLITICS ELECTIONS)

The Unspoken Side of Ehlers-Danlos Syndrome

As a senior in high school and freshman in college (dual enrollment program), who has just recently began to feel the awful effects of my chronic illness, is working a part-time job, active in my church, and so much more, I am doing the best I can. The reality of it all though, is I hurt. Some days, I hurt so bad that between driving from college to high school, or high school to work, I turn on my worship music and I cry. But no matter what, I make it through each and every day and I do it without complaining. No matter how bad I feel, I keep a smile on my face and enjoy the little things in life. But there is so much I do not expose to the people I love, such as:

1. I am scared.

I am scared that I wont be able to have children some day. I am scared that I wont be physically capable of working. I am scared that my boyfriend (even though he is very supportive) will one day become tired of my illness. I am scared that if I tell my family just how bad I am they will think I am attention-seeking or that it’s all in my head. I am scared that one day I wont be able to play my guitar any more or do artwork because my hands are getting worse.

2. My hands, wrists, hips, shoulders, and back cause me agonizing pain. I need braces and I need splints but I am embarrassed and afraid to ask for these things. I am embarrassed that at 17 years old my hips hurt so much that it hurts to walk. I am embarrassed that my hands have lost their grip strength that I once used to have. I need support but I won’t ask.

3. I feel like my boyfriend deserves better than me. I don’t ever want to hold him back.

4. I get anxiety attacks because I have been bottling everything inside.

5. I don’t want the people I love to know I feel this way. I want them to think I am happy and that I am handling everything just fine.

6. Being diagnosed with vascular Ehlers-Danlos syndrome, a very serious type, I am scared to know what my future has in store. But I feel like I can’t tell people this because then they, too, will be afraid.

This is raw emotion. It hurts. But through each and every day I enjoy the little things in life such as sunsets, the beautiful stars at night, the wonderful smell of coffee in the morning, the fall leaves that are finally turning, rainbows after a hard rainfall, rain on a hot day, and so much more, because those things keep me going. No matter how bad I feel, I have to remind myself that my pain is not my fault, but the illness’. I have to remember that my family loves me and that they would do anything for me. I have to embrace my good days and power through the bad ones. I continue to smile and I continue to do the things that make me happy.

Chronic illness is a hard thing to deal with not only physically but emotionally as well. But I am hear to say if you are reading this and you too feel these things, you are not alone. It is easier for me to face every bad day with a smile than it is to sit here and feel bad for myself. For I know I am stronger than I think I am and I can do this. I refuse to sit here and think about the fact that every day is the same. I wake up and pop everything back in place, I struggle to get out of bed and walk to the bathroom and brush my teeth and do my makeup as my legs are wobbling because I have been standing for too long. I put on my clothes and typically subluxate while doing so and move on with my morning. I know that no matter what, every day is the same and I can’t change that or choose how my day goes. But what I can choose is how my attitude about my illness and my life are. And I choose to have the best attitude that I possibly can because I am me. I am not my illness and I will not let my illness put me down or control my life. And I hope that you do not either. Much love to all my zebras out there.



Silhouette of man on a wheelchair

Safety Tips for Living with Ehlers-Danlos Syndrome

Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe.

EDS is a condition that leads to deformed connective tissue, the “glue” that holds the body together. Any sudden move or jolt, and your muscles and joints may come apart.

There is no cure for EDS, so living life with this condition means accepting a certain level of chronic pain.

I want to share some safety tips that I have learned that I hope will help others, like myself, who have EDS.

Car Safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

We ended up with a Prius recently and I realized I had to have the seat changed. Although the height was correct, I had to lift myself into the seat due to the design that sinks in from a lip on the side. We were able to find a person that could reconstruct the seat, making the entire surface flat.

To get into the car with the least chance of slipping out of position, I sit down on the seat, turn towards the front of the car and then I swing my legs into the car.

Check and see where your legs are when you sit down. It is best if they are at a ninety degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble.


If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an “up-slip,” where the femur jams up into your hip. It does not hurt at first, but tends to show up the next day and is very uncomfortable. To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Have someone check to see if your ankle bones meet. If there is an upslip, there will be a difference in the leg lengths. Get it corrected as soon as you can before it creates significant pain.

Opening Cans

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sub lux your hand, fingers, elbow and/or shoulder. A simple fix to this is to purchase a product called the Handy Can-Opener. All you do is set it on the top on the can, press a button and let it do the magic of opening the can for you!

Sleeping Safely with POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that causes light-headedness, fainting, unstable blood pressure, abnormal heart rates, and sometimes even death.  I learned I had it in my 60’s.

I was instructed to sleep at a 30 degree angle by raising the entire frame of the bed at the head. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed raisers sold that college students use to raise their dorms beds up to be able to store items underneath. We purchased four plastic bed raisers and found that if we use two on each of the head corners, we are able to raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS. You might want to check with the hotel or motel to ensure access to a bed which can be adjusted in this manner.

Greeting Friends and Family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you my mistake.


I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, It is also important to not cross your legs, for this can throw your sacrum out of place.


If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also find sandals that have a good arch when you are not able to wear sneakers.

Trachea and Neck Stability

I have spent many years dealing with a trachea and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine,I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the air flow has decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered that is holding the neck and head in the correct position and not allowing the trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Carrying Objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying a luggage with wheels, like you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

I hope these tips will be of help and hope you will comment and leave tips you have discovered. We need to help educate each other for a safer and less painful life.



7 Things I’ve Learned From Ehlers-Danlos Syndrome

When I was first diagnosed, I had a small meltdown… OK, a big meltdown. Now, two years on, I am learning to adjust. I am proud of the way I have adjusted. I have my ups and downs but I am grateful for the little things in life. I’m even grateful for some things I’ve got because of my illness. I wanted to share some of them with you. After all, we could all do with a little bit more self-appreciation.

1. Knowing I am not making it up! This is a big one for me. Since I was a child I’ve known there was something different about me. I knew I wasn’t like all the other kids. I remember being quite a small child and comparing myself to other kids, knowing I was not like them. I had aches and pains. I was more tired than other kids. I took longer to recover from simple medical procedures. For me, getting a diagnosis was bittersweet. I felt vindicated, like I wanted to shout, “In your face!” at anyone who had ever doubted me. But at the same time I still wasn’t happy. The realization dawned on me that by being right, I actually have to live with a medical condition for the rest of my life. But one thing I knew was I wasn’t a hypochondriac, I hadn’t been making it up and I am not a drama queen. After the initial shock wore off I was super grateful for that.

2. I learned a lot about friendship. Some people simply don’t know how to cope with your illness; you have to learn to be OK with that. Some people can’t figure out a way to be supportive when there is no solution. You might drift from friends you’d have least expected, but you might find that others become your besties. Remember the people you love the most are also most affected by your situation. They are fighting their own battle in coming to terms with what you’re fighting. So cut them some slack. I believe they’re doing the best they can. If they’re not giving you what you need, you can’t change that. You just have to accept it. Sometimes you get the best support from the least likely places, friends you didn’t consider to be your nearest and dearest step up to the plate and are there when you need them the most. Be brave, share how you feel and share your struggles – you never know who might surprise you. Maybe those further from your heart are able to look more objectively at your struggle and offer the best advice. Who knows? All I know is my buddies are the best and I love them!

3. I learned what I love. When you have a limited reserve of energy, you learn to prioritize your day. You learn to allocate a portion of your energy for things you want to do. I’ve learned to care less about the little things. At first I was always frustrated that there was stuff out of place or the dishwasher needed emptying, but after a while I realized these things can wait until the energy comes. They don’t really matter in the grand scheme of life. Nothing bad will happen if you don’t make your bed. What matters is how you choose to feed your soul. I learned to save my leftover energy for the things I love, like being creative, cooking, date night and visiting the amazing people I love. Become resourceful, you got this! You can find other ways of doing what you love.

4. I have learned how strong I can be. Granted, I have no choice. My options are fight like a wildcat or not, and become owned by my condition. It’s up to me. It’s Hobson’s choice: neither option sounds that appealing, but faced with the two choices, fight and be strong is the obvious one. It’s not always the easy one. It’s OK to get mad and shout and feel like rebelling against your treatment. Sometimes you’ve just got to let that crap out. Then dust yourself off and carry on fighting. When people say things like, “You’re so strong, I wouldn’t be able to keep going like that,” I often want to shout, “Of course you would! You’d have no choice!” But instead, I hold it in and smile. Then, once I’ve calmed down a bit, I think, damn! Maybe I am strong and maybe it’s OK to be proud of how strong I am.

5. I’m grateful for the realization I was grieving. It took me a long time to realize I was grieving for my old life and the old me. I couldn’t describe how I was feeling. I was sad about what I lost and angry about what my body was doing to me. I missed the carefree person I was and resented the wreck I had become. When I realized what I was feeling was grief, I could start to process it and let go of the old me. I allowed myself to begin repairing the broken bits. I stopped being so sad and eventually things started to make sense again. I felt like the color came back to my life and I could start to enjoy the little things again. It’s OK to grieve, just not forever. It’s a process you have to complete, almost a rite of passage for the chronically ill. You can make it to the other side.

6. You can use your illness as an excuse to get out of stuff you don’t want to do! It’s great! Of course, it’s really annoying when you actually can’t do something you wanted to do because of your illness, but every now and then you get a little bit of payback in the form of a ready-made excuse. It’s OK to say you can’t do it. I have been really bad at this – my mind is fiercely independent and stubborn (my body isn’t). Admitting I can’t do something doesn’t sit very well with me. But sometimes I have to hold up my tremoring hand and say, “I’m out.” Sometimes it isn’t that you have to miss out; sometimes it’s adapting and finding a different way of doing it. Admitting you need help is the first step to finding a solution.

7. I’m grateful for not caring what others think. Truth be told, I’ve never really cared too much about what others think of my appearance. I wear what I want, I have odd hobbies. I’m comfortable with myself. Now I have mobility aids and splints and that’s something I can’t change. I can change how I feel about them though. When I first got my glasses (before “geek chic” was a thing), I picked a pair of big purple ones. My husband said, “If you gotta wear them, you might as well own it!” So I own it! I’ve adopted the same approach to my medical aids. I’ve glittered my walking stick, I’ve painted my splints and I tie-dyed my tubigrips. I’m wearing them – they’re not wearing me! People can see them anyway so I might as well make them fit my style. Get the flashing lights on your wheelchair wheels. Get the pink chair. Stick rhinestones on your walking stick or frame. Customize your splints. If it makes you smile, do it! You’re still you!



Ehlers-Danlos Syndrome: More Than Just Stretchy Skin and Bendy Joints

When other kids tripped, they got back up. When Lara Bloom tripped, she got sent to the hospital. When other kids opened a jar of mayonnaise, they spread the contents on their sandwiches. When Bloom opened a jar of mayonnaise, she fractured her wrist. When other kids asked why she was always on crutches, Bloom wished she knew.

“I remember my friends not getting it; feeling very isolated and alone. No one understood — I didn’t even understand,” says Bloom, now a 36-year-old in London who estimates having broken her wrists 30 times in childhood. Using crutches to support her also injury-prone ankles only strained her wrists — which were eventually stabilized with pins — further. “It was just a vicious cycle of constant pain and no answer to any of the questions I had,” she recalls.

Bloom finally got an answer about 12 years ago at age 24, when she was diagnosed with Ehlers-Danlos Syndrome, a heritable cluster of disorders that can affect connective tissues like the skin and joints. More than “stretchy skin and bendy joints,” as Bloom puts it, the condition is often accompanied by symptoms including pain, fatigue, and digestive and psychological distress, as well as other chronic disorders like Postural Orthostatic Tachycardia Syndrome, or POTS. Some untreated patients may even have a greatly shortened lifespan if the condition affects their heart valves and leads to rupture. Bloom, for one, now attributes her constant childhood fractures and joint pain to the fragility of her soft tissues, which couldn’t properly support her bones.

“For years I’d been told that nothing’s wrong, and [I knew] deep down that I wasn’t an anxious person, I wasn’t a depressed person, I wasn’t imagining what was going on — it was very, very real,” Bloom says. “And finally finding out that there was a reason for everything I’d gone through as a child growing up was a real relief.”

Research suggests Ehlers-Danlos Syndrome, which can manifest in several forms, may affect as few as 1 in 5,000 people, according to the Ehlers-Danlos Society, an international nonprofit dedicated to raising awareness of and funds for studying the condition. But anecdotal and clinical evidence suggests it affects as many as 1 in 100, says Bloom, the society’s co-executive director, since many people are simply mis- or under-diagnosed.

And while more professionals — from dentists and physical therapists to psychiatrists and gastroenterologists — are beginning to recognize EDS as a possible culprit of various medical and mental health issues, “the problem,” says Dr. Brad Tinkle, medical director of clinical genetics at Advocate Children’s Hospital in the Chicago area, “is [that awareness] is not translated into a lot of patients feeling like they’re being heard and taken care of.”

Unknown Causes and Complicated Consequences

Of the various forms of EDS, health care providers and scientists seem to know the least about the hypermobile variety, which is by far the most common. “Almost all the others have genes associated with them,” says Dr. Peter Byers, a professor at the University of Washington School of Medicine in Seattle, where he studies heritable disorders of the bone, blood vessels and skin. But while there may be a genetic component to hypermobile EDS, which tends to run in families, experts don’t know precisely what it is.

They also don’t know which symptoms often seen in EDS patients — think joint pain, sensory problems, severe fatigue, low blood pressure and digestive issues — are due to the EDS itself, some other condition accompanying it, a third-party cause like a virus or a lack of proper management. Plus, experts say simply labeling all people with hypermobility as EDS patients can make over-diagnosis as much of a problem as under- or misdiagnosis.

“Hypermobility is just a symptom, and when you tell someone they have EDS, unfortunately that leads to a lot of other problems,” says Dr. Brad Landry, a pediatric rehabilitation specialist at the Mayo Clinic in Rochester, Minnesota. For example, patients may assume they’re at risk for fatal heart conditions that only affect people with a rare form of EDS or attribute all of their health issues to the condition rather than seeking more suitable care.



A special suit to soothe the symptoms of the Ehlers-Danlos Syndrome

Unknown to most people and rare. It is about the Ehlers-Danlos Syndrome. A genetic disease that causes hypermobility accompanied by hyperextensible skin, that lead to dislocations, resulting in a chronic pain state almost impossible to control with drug treatment.

But now, a special suit could restore hope to these patients by reducing their suffering. It’s called VETCOSED® and is a special compression garment that, thanks to its innovative fabric, allows the patients to regain muscle mass and movement. Tailored to meet different needs it is available for each part of the body: knees, elbows, ankles; in pants and shirt version, even under the form of glove, to give fingers support and relief.

The project is currently at the core of a clinical study, to whom only French patients can participate. However, it has already raised the interest of the international medical community because of its first positive results.



How I learned to live with my bendy body

She is feeling well and cheerful. Three days later things are very different. Exhausted and in pain she has taken to her bed and dosed up with heavy-duty painkillers. Sadly, she surmises, lifting her 20-month-old nephew was a bad idea.

Isobel, 36, suffers from joint Hypermobility Syndrome (HMS) and these flare-ups of pain she says “go with the territory”.

HMS, also sometimes known as Ehlers-Danlos Hypermobility Type Three, is a genetic disorder of the body’s connective tissue collagen.

In sufferers this essential protein is weaker meaning joints and ligaments are loose and stretchy which allows an unusual range of movement. This can lead to pain, fatigue, dislocations, soft tissue injuries and skin, digestion and cardiovascular system problems.

Despite the fact that as many as three in 10 people may be affected to some degree by hypermobility (although in many cases it affects only a small number of joints and causes no symptoms) the condition is still little known or understood.

It is common for sufferers to spend years trying to obtain a diagnosis. Isobel says: “As a child I was always told it was growing pains. As you get older you start to be treated like a hypochondriac.” Keen to try to raise awareness of the condition and to make things easier for others in her situation Isobel has now written a book about HMS (A Guide To Living With Hypermobility Syndrome, published by Singing Dragon, price £12.99).

She became aware her body was not working as it should as a teenager when she began to suffer back pain. She now knows her delayed walking, bouts of leg pain and a fractured leg at the age of seven were all linked to HMS.

“If it had been picked up sooner it could have saved me from a domino effect. The pains and problems cascade from each other,” she says.

Instead many of Isobel’s injuries were blamed on her passion for ballet. Her success in dance was in stark contrast to her lack of physical prowess in other areas.

“I was hopeless at all sports. It makes sense now. You have to control this extra range of movement all the time and that is very hard.”

In dance Isobel’s hypermobility was useful and allowed her to achieve difficult positions with ease.

Many dancers are hypermobile including the famous French ballerina Sylvie Guillem.

By the age of 13 most of Isobel’s contemporaries were starting to stiffen up with the onset of puberty but for her the increased flexibility of childhood remained. Although she never expected to make it as a top performer she began to dream of a career in dance.

Isobel achieved her goal and now works as an administrator at a London dance centre and enjoys several ballet classes a week. Before her diagnosis of HMS in 2008 a series of injuries had made dancing impossible. It was her lowest point.

“I had seen orthopaedic surgeons, neurologists and physiotherapists but everyone just dealt with individual problems. No one saw a pattern. I couldn’t work or have a social life because of the pain and my family found it hard to understand. I was very depressed. I felt I had been written off.”

The turning point was a chronic pain management course where Isobel learnt that pain doesn’t always mean damage. She was encouraged to take up ballet again under very careful supervision.

Enrolment on an MSc in dance led to a meeting with HMS expert and rheumatologist Professor Howard Bird and to a diagnosis.

“Suddenly everything started to make sense. I saw then that I had never known what was normal. I started to accept that I didn’t know my limits and adapt accordingly.”

Gradually Isobel feels she has taken more control and although the pain and fatigue remain knowing their cause makes them easier to deal with. She is having physiotherapy which helps to even out the strain on her muscles and joints and control her movements.

“I don’t know what the future holds but I have worked very hard to rehabilitate my body,” she says. “I realised recently that I am feeling healthy for the first time in my life.”