10 Things Anyone With Ehlers-Danlos Syndrome Wants Everyone Else To Know
Start writing a post
Health and Wellness

10 Things Anyone With Ehlers-Danlos Syndrome Wants Everyone Else To Know

1. You can't catch it

639
10 Things Anyone With Ehlers-Danlos Syndrome Wants Everyone Else To Know
wikimedia commons

May is an important month for almost everyone.

School is coming to a close, the days are getting longer and summer is just around the corner. It is also a month of awareness. Mental health, skin cancer, asthma, and arthritis all have their awareness month in May. Chances are you are someone or know someone who is affected by one of these. You've heard about them and most likely know the basics. May is also the awareness month for Ehlers-Danlos syndrome, probably something you've never heard of! This rare condition is underdiagnosed, misunderstood and unheard of to most of the world.

As someone with Ehlers-Danlos syndrome who spent years looking for a diagnosis, I know how important awareness and education is. Here is a list of everything you need to know about EDS and those who live with it.

1. Ehlers-Danlos Syndrome is a genetic disorder affecting the body's connective tissue

Good news: you can't "catch" EDS; Bad news: A) If you have it, you're stuck with it and B) it can cause a whole lot problems. EDS affects collagen production or structure. Collagen is a fibrous protein that is found throughout the body. It's basically the glue that holds everything together. People with EDS either have weak collagen or lack of properly structured collagen. This means that the main problems in EDS arise from the muscles, bones, blood vessels and skin. However, nearly every body system is or can be affected by Ehlers-Danlos Syndrome in some way.

2. There are 13 subtypes of Ehlers Danlos Syndrome

Hypermobile, classical and vascular types are the most common forms of EDS. All forms of EDS have symptoms in common but they can vary immensely. Some forms are extremely rare. Dermatosparaxis EDS has only been identified in 12 people!

3. Mutations in one of over dozen genes can cause Ehlers-Danlos Syndrome

All types of EDS except for hEDS have an identified basis. However, there are many genes that can cause a problem within collagen or its production. Mutations in COL5A1, COL5A2, COL3A1, COL1A1, TNXB, COL1A2, PLOD1, PRDM5, COL12A1 and more al cause forms of EDS. I'm sure the last sentence looks like alphabet soup to nearly everyone but I swear they all mean something!

4. People with EDS are commonly misdiagnosed or dismissed completely

Many people with EDS are told they are hypochondriacs, have depression and anxiety or are simply overreacting. This can lead to years of pain, self-doubt, frustration. Awareness and advocacy are extremely important to the EDS community because of this.

5. The three hallmarks of EDS are hypermobility, skin extensibility, and tissue fragility

While these three are seen in almost all Ehlers-Danlos patients, a whole host of other signs, symptoms and co-morbid conditions can occur. Almost all of the body systems are affected by EDS. So while we may just seem double-jointed, there are about 100 other things going on.

6. Ehlers-Danlos Syndrome can be accompanied by a multitude of co-morbid conditions

When you have EDS, you predisposed to developing or having a host of other medical problems. Thoracic outlet syndrome, scoliosis, Chiari malformation, POTS, gastroparesis, MCAD and valvular heart disease are just a few of the complications EDSers can face.

7. Ehlers-Danlos Syndrome is classified as a rare disease by the National Organization for Rare Diseases

However, due to the underdiagnosis of the condition, the true frequency of EDS is unknown. Hypermobile EDS is the most common with a rate ranging from 1 in 5,000 to 1 in 20,000. Rarer forms occur much less frequently with kEDS occurring in 60 people and aEDS occurring in 30.

8. People with Ehlers-Danlos almost always have chronic pain

It's just a fact that most people with EDS live with chronic pain that can be excruciating. Due to the condition, we are prone to dislocations, sprains, and subluxation of our joints. Coupled with the chronic muscle and joint pain caused by the syndrome and other co-morbid conditions, most of us are in pain all of the time. For example, in my relatively moderate case, I take four medications to manage my pain along with two "rescue" meds.

9. There is no cure for Ehlers-Danlos Syndrome

The only type of treatment for EDS is supportive. Doctors can help to deal with problems as they arise but there is no way to fix the actual cause. Physical therapy, pain management, surgery, bracing, and close monitoring help to manage symptoms and prevent serious complications from arising. We're basically putting band-aids on an open fire hydrant all of the time and hoping the water will just stop at some point.

10. The EDS mascot is a zebra

A common phrase in medicine is "When you hear hooves, think horses, not zebras". This means that the easiest explanation is most likely. They tell doctors to not go looking for something rare and wild when there's a simpler answer. However, us zebras do exist. There are those rare cases out there! We use the zebra as our mascot to show that rare diseases exist and that they warrant attention, awareness, and attention.

To learn about Ehlers-Danlos Syndrome, it's subtypes and current research/advocacy efforts check out: https://www.ehlers-danlos.com/

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
Featured

13 Ways Barbie Movies Shaped My Childhood

My childhood would not have been the same without them.

2146
Taylor Hawk

Barbie movies were a huge part of my childhood. I mean huge. If you are like me, I welcome you to take a healthy dose of nostalgia as I explain how Barbie movies shaped my childhood. The movies...

Keep Reading... Show less
Featured

Pride Doesn't End With June

Here's seven ways you can be an ally to the LGBTQ+ community after pride month ends.

5579
Pride Doesn't End With June
Photo by Sara Rampazzo on Unsplash

As July begins, the month we call 'Pride Month' is technically over. However, just because pride month is over doesn't mean we can't still show pride and support for our LGBT brothers and sisters. This article here will tell you seven ways to be a supportive ally to the LGBTQ+ all year round.

Keep Reading... Show less
Featured

My 4th Of July Look

MISS SWISS - Glamour On The Go

5079
My 4th Of July Look

Whether I can get to the beach this weekend or I'm just at a friend's pool, I know I'll be picture ready. Fourth of July weekend following so close behind Pennsylvania lifting the state mask mandate has me anticipating many smiling faces, eager to capture the moment.

Keep Reading... Show less
Featured

Eat and Drink Your Way Through Los Angeles With Me

When i die spread my ashes at the Bubba Gump at Citywalk

3861
Eat and Drink Your Way Through Los Angeles With Me
Hailey Hastings via Canva

First and foremost, I am a foodie. In any city that I am in, the first thing I want to know is where the best places to eat and drink are, and I imagine a lot of you are the same. Los Angeles happens to be one of the greatest food cities in the United States, so it's only right that I present you guys with this list. These are the best places (that I have tried) in Los Angeles to eat or drink.

Keep Reading... Show less
Featured

Your Guide to Dryness-Preventing Nutrition

You might be surprised to learn that nearly half of women over the age of 50 struggle with uncomfortable symptoms due to vaginal dryness. This is an extremely common issue for those entering menopause, but it can also affect those of a younger age as well.

4086
Dryness-Preventing Nutrition

You might be surprised to learn that nearly half of women over the age of 50 struggle with uncomfortable symptoms due to vaginal dryness. This is an extremely common issue for those entering menopause, but it can also affect those of a younger age as well. Common issues like UTI’s, yeast infections and medications can cause vaginal dryness but one of the big culprits for both cause and prevention is diet. Supplementing your diet with nutrients and vitamins to encourage your body to produce the hormones it needs are one of the many home remedies for dryness. There are many factors that can cause dryness and the uncomfortable symptoms that come along with it, and diet is one of the big culprits on the list. Keep reading to learn about adopting nutrition habits that both alleviate and prevent dryness!

Keep Reading... Show less

Subscribe to Our Newsletter

Facebook Comments