Latest Posts

Fight Song Video Project – Send In Your Video Clip!

Fight Song Video Project – Send In Your Video Clip!

  • Max 1 min video clip of you singing, dancing, or both to “Fight Song” by Rachel Patton
  • For anyone suffering from a chronic illness, including those who love and care for someone with a chronic illness, especially those with Ehlers-Danlos syndrome (EDS), Mastocytosis, Mast Cell Activation Syndrome (MCAS), and Dysautonomia/POTS
  • Email to Kendra@wellapalooza.com
  • Your submission means that you are giving us permission to use your video for a compilation video project that will be shared publically. 

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Wellapalooza 2016 Retreat Registration Information

Wellapalooza 2016 Retreat Registration Information

IMG_7585Our 2016 Wellapalooza conference is a destination 3-day integrative health and wellness retreat. Think vacation, calm, fun, and informative – the perfect way to recharge your mind, body, and soul!

Dates: June 10th – 12th, 2016

Where: Maryland – split between Bethesda and Columbia

Venues: The Mindfulness Center (Bethesda, MD), Haven on the Lake (Columbia, MD), and Turf Valley Resort (Ellicott City, MD)

Confirmed speakers:

– Dr. Clair Francomano (EDS/Genetics)
– Dr. Larry Afrin (MCAS & Author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness & Medical Complexity)

– Dr. Christine Mohrhaus Hale (Tenet Healthcare)

– Deborah Norris, Ph.D. (The Mindfulness Center)
– Rebecca Snow (Nutritionist/Herbalist/Chef)

– & more!

Registration for Wellapalooza 2016 is now live!

We will be posting additional event details as we have them, but please feel free to email info@wellapalooza.com with any questions.

Conditions of focus: Mast Cell Activation Disorders (MCAD), Ehlers-Danlos Syndromes (EDS), how these conditions relate to each other, and to other common chronic medical conditions.

Food: We will be providing snacks and drinks, but will NOT be providing meals. Due to the multiple sensitivities that so many of us have, we chose to minimize the chance of reactions, which also allows us to keep the registration cost low. There is a Whole Foods one floor above Haven on the Lake, several food options within a few yards of The Mindfulness Center in Bethesda, MD, and other food on the Turf Valley Resort property. Additional details will be listed on the Wella website and Facebook pages.

Sponsors: The Mindfulness Center, Haven on the Lake, Turf Valley Resort, Whole Foods, and more!

What is Wellapalooza?

The best integrative health and wellness conferences (& retreats!) ever!

Wellapalooza believes in integrative healthcare, utilizing the benefits of Western medicine, with the integrative approaches of Eastern medicine in managing chronic health conditions.

We are MORE than a typical health conference.

Wellapalooza integrative health and wellness conferences believe in bringing education, “how to” help and fun to the people who need it the most.

We provide you with informative, reputable and updated information on how to manage chronic conditions from community thought leaders, as well as instruction on how to approach various alternative therapies while focusing on what you can do versus what you can’t.

We bring doctors, therapists, healers, body workers, nutritionist, wellness practitioners and exercise moderators together for YOU all in one place. Wellapalooza offers workshops, active seminars (you will not just sit there), interesting presentations, and various additional activities to enjoy on your own while attending a conference.

Wellapalooza is the ticket to laying a strong foundation for your body’s journey to greater overall health and wellness.

THIS is how Wellapalooza is different – Integrative. Mind/Body focused. Fun.

Our 2016 Wellapalooza conference is a destination 3-day integrative health and wellness retreat. Think vacation, calm, fun, and informative – the perfect way to recharge your mind, body, and soul!

DWellapalooza is the ticket to laying a strong foundation for your body’s journey to greater overall health and wellness.

THIS is how Wellapalooza is different – Integrative. Mind/Body focused. Fun.

Key details are listed below, but more announcements are coming soon!

Total cost estimate for all three days is $300; however, if you purchase the 3-day retreat ticket, you will receive a discounted rate of $275 for all three days. You also have the option to pay for a specific day. Attendance rates per day range from $75-$125 depending on the day.

You will have “free time” to enjoy the facilities. The intent is that you will use this time to make spa and salt cave appointments, use the healing environments, and try the various classes that Have on the Lake and The Mindfulness Center offer.

Both The Mindfulness Center and Haven on the Lake have generously provided a fantastic discount to access their facilities all day. The discounted cost will be part of your registration ticket each day. Prices include daily access to Have on the Lake’s and The Mindfulness Center’s amenities, the salt cave and other healing environments at Haven on the Lake, and classes at both venues on the day of attendance.

Your registration also covers all Wellapalooza presentations, seminars, and private group classes, the keynote presentation on Saturday evening – a dinner option will not be offered due to cost.

Haven on the Lake also has a fantastic spa, as does Turf Valley Resort. The Mindfulness Center also offers wellness services. All spa and wellness appointments are NOT part of your Wellapalooza retreat registration, but we will provide you details on how to make appointments at your convenience.

Sign-ups for classes and the salt cave will be done day-of at Haven on the Lake, since priority access is provided to members. Similarly, The Mindfulness Center has a certain number of spots for Wellapalooza attendees in all three non-Wellapalooza private group classes offered on Friday.

Spa and wellness appointments should be made in advance at any of our venues. We will provide details on how to sign-up for spa and wellness appointments, salt cave reservations, and for classes at each venue very soon.

Hotels and food, other than snacks and drinks provided as part of Wellapalooza 2016 or one of our presentations, will be the responsibility of each attendee . For food specifically, there’s a massive Whole Foods one floor above Haven on the Lake, and there’s plenty of parking for both.
Haven on the Lake also offers childcare for an additional and separate charge. Wellapalooza attendees will have access to Haven’s childcare facility, but reservations are required. More details will be provided soon.

Turf Valley has graciously offered to hold a room block of 3 rooms (we can request more if needed) at a discounted rate of $144 per night for an executive king or double room for Friday – Sunday. Rooms in the room block first come, first, serve.

If you would like to reserve a room for Wella weekend 2016, please make sure to call before May 20th, 2016. Otherwise, any remaining rooms left in the room block will be released, and discounted pricing is not guaranteed, nor is the executive king room. To make a room reservation at Turf Valley for Wellapalooza 2016 weekend, please call 1 (410) 465-1500.

Turf Valley and Haven on the Lake are approximately 5 miles away from each other, and about a 30-45 minute drive to The Mindfulness Center in Bethesda, MD (location of Wellapalooza Day 1). If you would like to come in for all three days and are concerned about transportation from Turf Valley Resort or the Columbia, MD area to The Mindfulness Center for Wellapalooza Day 1 on Friday (Bethesda, MD), please let us know.

We split the locations and venues based on need, to offer people the option of daily attendance, and to try to make Wellapalooza as accessible to as many people as possible.

The Physicians Learning Lunch is NOT wrapped into the total cost of Wellapalooza for all attendees – it is a separate seminar for healthcare providers only who would like to learn about MCAS and MCAD from Dr. Afrin. Options will be offered for healthcare providers who would like to attend Wellapalooza for the full day, including access to Haven on the Lake for the day, or who would like to solely come to the Physicians Learning Lunch.

Details and event flyers will be posted soon, and we would love for you to help us spread the word!

A tentative conference schedule can be found here, but additional details, speakers, classes, seminars, and final retreat schedule will be shared as soon as possible.

We cannot get into a studio at Haven on the Lake for speaker presentations or other Wellapalooza-specific activities, until 2pm each day. The mornings through lunch will be low-key; however, the first presentation on Saturday with Rebecca Snow will be held in the Whole Foods cafe one floor up from Haven on the Lake.

Please also remember that we will do our best to consider the sensitive nature of our broader chronic illness community; however, we cannot guarantee an absolutely safe environment for everyone. Attendance is at the risk of each attendee. We are all responsible for doing our due diligence to ensure that we make the best judgment for our bodies.

We will be recording all presentations, and will live streaming portions of Wellapalooza 2016 (not full presentations) and live tweeting during the conference.

We are also looking into a virtual attendance option – virtual attendance is not guaranteed to for this Wellapalooza. If we are able to put it together, there will be a virtual registration fee to be able to attend online. More details coming soon!

The Mindfulness Center is also offering a 10% off discount for Yoga Teacher Training program – the same program that Wellapalooza’s owner is currently going through.

Additional seminars and classes that may be included in the final Wellapalooza 2016 schedule (no guarantee):

 

– Natural Movement and at home physical therapy approaches for hypermobility, chronic pain, and related conditions (i.e., How to move more and move better, even for “Just 5 Minutes” a day at home and on your own).
– Breathwork class
– Women’s Health – Chronic pelvic pain conditions and how they relate to EDS and MCAS
– Hormones and Thyroid disorders presentation and discussion
– Reiki
– Salt Cave Apts. or Hope Floats appointments for Friday Wellapalooza attendees
– TTapp or Melt Method workout
– Acupuncture

– Skin Care & Hair Care presentation and discussion

Refunds: Refunds will be made ONLY if canceled seven days before event date. If cancellations are made within the seven days before the event, NO refunds will be made. No exceptions. We have to make final payments for all venues a week before Wellapalooza 2016 and are guaranteeing the number of attendees when we make a final payment. We recommend purchasing trip insurance, if necessary.

Disclaimer: All participants come at their own risk. We are a sensitive group of people, and there is no way to ensure the perfect, safe environment that meets everyone’s’ unique needs. EDS Wellness, LLC, Kendra Neilsen Myles, or our retreat venues, sponsors or affiliates, will be not be held responsible for injuries or illnesses sustained as a result of attending Wellapalooza 2016. Your registration and payment serve as your acceptance of the terms and conditions of this event, as well as your agreement that EDS Wellness, LLC, Kendra Neilsen Myles, or any event venues, sponsors or affiliates, are not liable for injuries or illnesses sustained as a result of attending Wellapalooza 2016.

 

May is EDS Awareness Month!


May is EDS Awareness Month!




In honor of EDS Awareness Month (May), Sarah Wells from My Stripy Life and I are sharing details on what you need to do to register for your FREE copy our parenting EDS Kids e-book ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS) once it’s released!

Cover Photo

Cover Photo

What first started out as a joint blog post about parenting and having kids with EDS, turned into a six-month-long project that Sarah and I have been working on off and on, waiting for the right time to finish and release it. As we continued to collaborate on it, we kept finding more and more to add, and even more information and resources that we wanted to make sure were included in our post – which then turned our joint blog post into a full resource e-book.

This e-book is the real; no holds barred advice that we wish we knew, and we hadn’t had to figure out for ourselves, the stuff that the medical books don’t always tell you!

Our parenting kids with EDS handbook/e-book is an excellent resource for parents with newly diagnosed EDS Kids, in fact, all EDS parents! It includes all of the tips and advice it has taken us years to figure out on our own – both moms of three kids with various degrees of Ehlers-Danlos syndrome and its related conditions. This e-book is the honest and practical advice that best friend would give you.

We’ve included details on what you need to do to register for your FREE copy our parenting EDS Kids e-book 51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS) once it’s released!

You can register for your copy in three easy steps:

1) Like our FB pages 

EDS Wellness on Facebook!

My Stripy Life on Facebook!

2) Sign-up to our newsletters – subscription links are below 

EDS Wellness’ Newsletter & Email List – Subscribe!
My Stripy Life’s Newsletter & Email List – Subscribe!

3) Share a post (one post from each of us during the month of May)

Additionally, EDS Wellness, Inc., a wellness non-profit, shares information on integrative and natural approaches to managing Mast Cell Activation Disorders (MCAD), Ehlers-Danlos syndrome (EDS), other hypermobility syndromes, and related conditions.

The new EDS Wellness website will be launched very soon, and we are also holding our second Wellapalooza Retreat in June 2016 – Registration is now live! 

We’ve also been working on other exciting projects that will be announced this month!

IMG_1817What is Wellapalooza?



Wellapalooza is the coolest integrative health conferences (& retreats!) ever!

Wellapalooza incorporates integrative therapies and the latest research and information on EDS, MCAD, and related chronic illnesses together in one conference!

Subscribing to the EDS Wellness, Inc. Just 5 Minutes Integrative Wellness Newsletter/Wella News will make sure that you receive updates on all information mentioned in this post, any additional, and relevant updates. Subscription link is below. ***Please note, while this post is shared on my personal yoga journal blog/website, the newsletter/email subscription and content shared here, is different from the EDS Wellness and Wellapalooza email subscriptions and newsletters. There will be some overlaps, but the

***Please note, while this post is shared on my personal yoga journal blog/website, the newsletter/email subscription and content shared here, is different from the EDS Wellness and Wellapalooza email subscriptions and newsletters. There will be some overlaps, but the purposes and content focus for both are different.***

Subscription link for the EDS Wellness, Inc. Just 5 Minutes Integrative Wellness Newsletter/Wella News  

Please share any feedback on specific topics that you would like to see covered in our newsletters, including any additional comments when you sign-up. You can also send an email to Kendra@edswellness.org.

Thank you for your interest and support!

We look forward to hearing from you!

Cheers!



- EDS Wellness, Inc. and Wellapalooza

Join us socially!

 

EDS Wellness Facebook Page: https://www.facebook.com/EDSWellness/

Wellapalooza Facebook Page: https://www.facebook.com/wellapalooza/

Print

EDS Wellness, Inc.

EDS Wellness, Inc. is a non-profit organization promoting health education, integrative healthcare, and wellness strategies for living well with Ehlers-Danlos syndrome (EDS), through the publishing of print and digital media resources and materials, including seminars, webinars, conferences, coaching and patient advocacy.

EDS Wellness, Inc. provides education on various movement, nutrition, and mind-body techniques by collaborating with healthcare practitioners and like-minded organizations, to improve the quality of life and overall well-being of individuals living with EDS and other chronic, often invisible illnesses.

EDS Wellness, Inc. collaborates with other organizations and healthcare practitioners on various projects associated with Ehlers-Danlos syndrome (EDS) and related conditions, to provide information & resources for those living with EDS and the medical professionals who care for them. EDS Wellness focuses on helping patients live well while living with EDS and other chronic health condition(s).

Wellapalooza™ is a registered and protected trademark and trade name of EDS Wellness, Inc. 

51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)

51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)‘ – new e-book coming soon for EDS Awareness Month!

Hooray! I cannot explain how excited I am to finally be able to share this awesome project with everyone! For EDS Awareness month we will be giving you a sneak peek each day from our upcoming e-book ‘51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’ – coming soon for EDS Awareness Month!

What first started out as a joint blog post about parenting and having kids with EDS, turned into a 6 month-long project that Sarah Wells (from My Stripy Life) and I have been working on off and on, waiting for the right time to finish and release it. As we continued to work on it, we kept finding more and more to add, and even more information and resources that we wanted to make sure were included in our post – which then turned our joint blog post into a full resource e-book.

The real, no holds barred advice that we wish we knew and we hadn’t had to figure out for ourselves, the stuff that the medical books don’t always tell you!

What you need to do:

  • Like both the EDS Wellness & My Stripy Life Facebook Pages (if you haven’t already done so)
  • Sign-up to receive email updates from both of us, including new blog posts, our newsletters, and pertinent information. No, we will not spam you and probably will not get around to emailing that frequently – promise.
  • Share one of our 31 Tips posts from each of us during the month of May on Facebook or Twitter. Meaning – share a total of 2 posts all posts – 1 post from Sarah and one post from EDS Wellness (or share a 31 Tips post from any of my pages)
  • Subscription links are below:

Stay tuned for more top tips each day and information about how to get a copy of “51 Tips for Parents of Children Newly Diagnosed with Ehlers-Danlos syndrome (EDS)’ delivered straight to your inbox!

Cheers!

– Sarah & Kendra

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What is EDS?

WHAT IS EHLERS-DANLOS SYNDROME (EDS)?

Once you receive an Ehlers-Danlos syndrome diagnosis or even if you think you may have EDS, many people will ask, “What is Ehlers-Danlos syndrome?”  Having knowledge on what EDS is and how it may “look” both on the outside and on the inside of the body, is one the best things that someone new to EDS can do for themselves.  Taking the time to gain a strong understanding of EDS, has helped numerous people find the appropriate treatments and therapies, as well as learn ways to handle the different aches, pains and issues that may arise. 

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Ehlers-Danlos syndrome (EDS) is a group of heritable connective tissue disorders that are caused by various genetic defects in the collagen protein used to make our connective tissues. These disorders can cause a wide variety of complications throughout all body systems – Ehlers-Danlos syndrome is very much a multi-systemic disease.  Previously believed to be rare, based on recent research, the prevalence of EDS could be as high as 1:100 to 1:200 people (Collins, 2015; Nielsen, 2013), or higher. Each type of EDS is characterized by a distinct problem in making or using one of the types of collagen. Collagen is the body’s most abundant protein and can be found in nearly every component of our bodies, from our ears, to our eyes and mouth, to our heart, surrounding our internal organs and veins, connecting our joints, in our bones and down to the tips of our toes. Collagen is a structural protein that provides both strength and elasticity to our tissues and allows our tissues to be stretched safely without damage or without being stretched past a normal range. The collagen protein under a microscope has the shape of a twisting helix, and stability for the collagen protein comes from the amino acids Hydroxyproline and proline. L-Hydroxyproline — a critical component of the collagen protein. Basically, Ehlers-Danlos Syndromes are structural problems caused by defects to the “glue” that holds our bodies together.

A perfect example is described on the website for the EDS 2016 International Symposium (eds2016.org) – “If one builds a house with bad materials, perhaps half [of] the necessary wood or aluminum nails, one knows there will be problems. Some problems can be anticipated, but because those materials were used everywhere and aren’t necessarily visible, one may be surprised. Being built out of a protein that doesn’t behave the way it should can result in widespread difficulties in a wide range of severities, even in places one wouldn’t think are connected until one realizes that collagen is used there, too.”

As you can see, Ehlers-Danlos syndrome is a multi-systemic condition that presents differently in those affected. Symptoms of Ehlers-Danlos Syndrome often include, but are not limited to: joint hypermobility (not to be confused with flexibility, as people can be hypermobile without being flexible and vice versa—hypermobile joints are loose or unstable and slip or dislocate easily), complete dislocations, prone to bruising easily and tissue fragility – such as skin that tears easily, vascular issues and internal organ rupture, poor wound healing, abnormal scarring, chronic fatigue, chronic pain, cardiac abnormalities, foot deformities, TMJ dysfunction, low muscle tone, hernias, early osteoarthritis and degenerative discs, various GI problems and allergies, chronic headaches, eye problems, dysautonomia (i.e. POTS), dental issues, chronic pelvic pain in women, congenital defects of the spine (including the head, neck and the entire spinal column), ADD/ADHD, learning disabilities, circulatory issues and much more.

You can read more about the signs and symptoms of EDS, by going here.

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Meme originally shared by Ehlers-Danlos Support UK (www.ehlers-danlos.org) via Twitter.

Often, patients are diagnosed with various conditions that are considered comorbid to Ehlers-Danlos syndrome – that is the presence of one or more additional disorders that can co-occur with the primary disease or disorder, such as: fibromyalgia, chronic fatigue syndrome/ME, mast cell activation disorders, IBS, gastroparesis and functional GI issues, POTS and other dysautonomia, CRPS/RSD, Raynaud’s and other circulatory conditions, various dermatological conditions, mitral valve prolapse and other cardiac conditions, osteogenesis imperfecta, Chiari malformation, scoliosis, craniocervical instability, tethered cord syndrome and other structural congenital conditions of the spinal column, osteoarthritis and degenerative disc disease, migraines and other types of chronic headaches; and various conditions of the eye, ears, and skin. These comorbid can be diagnosed at times, without diagnosing the underlying cause, EDS.

Pain can be widespread—for instance, collagen makes up the fascia, which is the tissue sheath that holds everything together and wraps around the entire body—but a cause of pain may not show up in MRIs or X-rays, and will often be out-of-proportion to any clinical findings.

Ehlers-Danlos Syndrome is usually diagnosed based upon the Beighton Score; a nine-point clinical assessment for joint hypermobility. Those that score greater than a 4/9 are diagnosed with EDS Hypermobility Type. However, this assessment often discounts people who have various other signs and symptoms of EDS, because many score lower on the Beighton Score. In that case, The Brighton Diagnostic Criteria is used and includes major and minor criteria for diagnosis. Many times, people have overlapping symptoms over different types of EDS, including vascular type, and a genetic test either through a blood sample or skin biopsy is warranted to give a definitive diagnosis; however, a genetic test is not a current requirement to receive an EDS diagnosis.

***Note: The above paragraph discusses diagnostic criteria of Ehlers-Danlos syndrome at present; however, because of advancements in genetic testing, recent findings in EDS research and more expansive clinical knowledge, the EDS 2016 International Symposium plans to reclassify the diagnostic criteria for all types of Ehlers-Danlos syndrome. The symposium will also establish an internationally recognized set of guidelines, with the purpose of providing a standard of care that all medical professionals will use globally. Beighton Score + Bright Criteria = proper EDS Dx (at present). Diagnostic guidelines will be updated at the 2016 EDS International Symposium next May.***

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Meme originally posted by “You know you have EDS when” on Facebook

Currently, there are six major types of Ehlers-Danlos syndrome, including Vascular Type, which is considered most severe due to the increased risk of arterial, cerebral, and organ rupture at any age.

The six main types of EDS are:

Hypermobility Type

Classical Type

Vascular Type (Click on link for Vascular EDS Emergency Information)

Kyphoscoliosis Type

Arthrochalasia Type

Dermatosparaxis Type

However, additional types of Ehlers-Danlos syndrome are being discovered as more research is done and our understanding increases.

Additional types of EDS are:

Musculo-contractural type

Multiplex congenital

Periodontitis Type

Progeroid

B3GALT6 Deficiency

Cardiac valvular

FKBP14-related

Spondylocheirodysplastic

Tenascin-X Deficient

Periventricular heterotopia, ED variant

Other types mentioned in literature, but lacking a clear definition, are disputed, or have been reclassified include:

Classic-like EDS

Beasley-Cohen

Friedman-Harrod Type

EDS/OI Overlap

Vascular-like

Dermatosparaxis Type

RIN2-Syndrome

EDS Type V (X-linked – found in one family)

Occipital Horn Syndrome (EDS Type IX)

Brittle Cornea Syndrome

EDS Type X (Fibronectin Deficient – found in one family)

The EDS Type XI (Familial Joint Hypermobility Syndrome – may be linked to Hypermobility type)

New types of EDS recently identified:

(It has not been stated if any of these are related to any of the additional or dispute types listed above)

Despite being named in the early 1900s, it is quite obvious that Ehlers-Danlos syndrome is far from rare and that both men and women of every race and ethnicity can inherit it. Many have suggested that EDS may be one of the most prevalent, yet under-diagnosed disorders. Currently, there is no cure. However, many symptoms can be prevented or treated as they arise and individuals can lead healthy, active, and fulfilling lives.

Ehlers-Danlos Syndromes are a set of true multi-systemic conditions that not only affect the joints but can also affect each system in the body in various ways. To read more, see links below. Additional resources and links are listed at the bottom of the page.

Signs and Symptoms of EDS

Beighton Score for Joint Hypermobility

Brighton Diagnostic Criteria for Ehlers-Danlos Syndrome 

How is EDS Diagnosed? 

I have EDS, now what?

Additional EDS Resources: 

Emergency and Vascular Ehlers-Danlos syndrome Trauma Information

***The post was originally written for Strength/Flexibility/Health/EDS.com and is reposted with permission from the author.***

 

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Quote by Dr. Rodney Grahame – meme originally posted by Ehlers-Danlos Support UK (www.ehlers-danlos.org)

 

 

Yoga and The Hypermobile Yogi

Yoga and The Hypermobile Yogi – Managing Chronic Pain and Stabilizing Joints with Ehlers-Danlos syndrome (EDS)

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“Yoga is dangerous for EDS.”
“I was told not to do yoga.”
“Yoga will make you end up in a wheelchair.” 

I’m sure that you’ve heard all these phrases before, and many people feel that that all three are absolute truths. While we all are entitled to our opinions, the fact is there is no black and white factual statement that has come out about doing yoga when you have Ehlers-Danlos Syndrome. Usually, our ideas stem from personal beliefs, from what we have been told by someone we trust, or from our experiences with yoga. We are all different, and the truth is what works for someone else, does not work for you and vice versa. This applies to the practice of yoga.

There are countless people with hypermobility/Ehlers-Danlos syndrome, who have been practicing yoga for years and have done well. There are also those who tried it and did not have the strength, nor were self-aware enough to know how to protect their hypermobile joints when practicing yoga. In their defense, extreme hypermobility used to be glorified, not just in yoga, but dance, gymnastics, and other sports where being able to bend and twist your body in extreme ways was viewed as a value and helped give you that edge over others who could not do the same.  You take that same person who is not aware of how to protect their hypermobile joints when practicing yoga and pair that with an instructor who may not be aware of the damage that can be done long-term to the body when pushed to those extreme positions, and you can see why many EDSers were told not to do yoga.

When you learn more about the philosophy of yoga and the various types of yoga, it becomes apparent how much more there is to yoga than what is perceived by many as a form of exercise where you need to push poses to the extreme. Yoga is quite the opposite. My feelings on the topic of yoga and EDS probably come as no surprise to anyone who reads what I post or sees my Instagram yoga challenge pictures. However, I have not always liked yoga, nor thought it was beneficial to me. I felt that yoga was quite annoying, but I never questioned if it was good or not or not for me once I was diagnosed with EDS. Then again, I was also told to not workout at all and didn’t listen. So, it’s likely anything I was told about yoga would have gone in one ear and out the other as well.

My opinion about yoga changed when I bought a Bryan Kest’s power yoga tape (a VHS tape to be exact!) when I was in college. I purchased this video because I’ve always done intense workouts and wanted something like yoga to help balance out my workouts. I also wanted to do something when I didn’t feel like working out. I liked the idea of yoga, but a traditional class was way too slow and tedious for me. I wanted more intensity and the pace to move slightly fast, which is how I learned that there are different types of yoga practice. From what I read, vinyasa flow yoga and ashtanga yoga seemed to be more up my alley. Bryan Kest’s power yoga tape was the perfect blend of ashtanga and vinyasa flow yoga practices, and it soon became a regular in my workout routine. I even worked out to Bryan’s video the morning of my wedding. Because I’ve always followed the Just 5 Minutes rule and have done it for years, that still applied on my wedding day. Plus, I needed a way to calm my butt down.

Teaching Yoga to People with Hypermobility. ~ Jess Glenny

IMG_2163 Yoga – One woman’s story on managing chronic pain from EDS

Christine is a friend that I met via her Facebook page and her article. She also submitted a story for Our Stories of Strength – Living with Ehlers-Danlos Syndrome.

The Healing Power of Yoga: How Practicing Helped Me Cope with Pain

“Many of us have dealt with a painful injury or illness at some point in our lives—some more serious than others. But for Christine Spencer, a 30-year-old from Collingswood, NJ, dealing with severe pain is an ever-present fact of life.

Spencer was diagnosed at 13 with Ehlers-Danlos Syndrome (EDS), a debilitating connective tissue disorder related to fibromyalgia. It causes hyper-mobility, muscle tension, constant pain, and in some cases, death.

When her symptoms worsened and caused her to withdraw from college, doctors wrote her a prescription for a cocktail of medications, including painkillers. ‘This was the only way Western medicine knows how to deal with disease,’ Spencer says. ‘I did some physical therapy, but no one gave me a long-term plan to help me heal.’ For months, she was completely disabled and unable to carry on with any semblance of a normal life.”

http://www.yogajournal.com/article/health/pain-reliever/

Yoga and EDS links and resources:

– This post was originally written for Strength/Flexibility/Health/EDS  Yoga and Hypermobility – Managing Chronic Pain and Joint Stabilization with Ehlers-Danlos Syndromes/Hypermobility Syndromes;” however, StrengthFlexiblityHealtheds.com is currently being prepared to relaunch as the first and ONLY digital wellness magazine for those living with Ehlers-Danlos syndrome, other hypermobility syndromes, and related conditions. Relaunch is planned for May 2016.

– Bryan Kest’s Power Yoga Video – Sweat

– Rodney Yee’s Yoga for meditation

Do Yoga Now

Do Yoga with Me

Yoga International 

Yoga Alliance

Yoga Journal

The Gluten Free Yogi’s collection of yoga for beginners videos and links

Dr. 911 Well on Twitter

14 types of yoga explained

Jenni Rawlings article on hypermobility vs. flexibility

JENNI RAWLINGS YOGA & MOVEMENT website

Jess Glenny’s Moving Prayer Practice Blog

Katy Bowman’s post on Hypermobility

Tips for managing Hypermobility Ehlers-Danlos Syndrome

The relationship between chronic pain and inactivity

Moving Naturally with Hypermobility seminar summary and presentations

Answers to questions about exercise and EDS (3 post series)

PT and exercise resources and links for those with EDS

Pilates with Hypermobility

Living with Hypermobility Syndrome

Bryan Kest’s Power Yoga Video – Sweat

Rodney Yee’s Yoga for meditation

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Disclaimer: Yoga may work for some and not for others. This post is for your information only and should not be substituted for proper medical care, or viewed as a directive for those who have hypermobility syndromes, such as Ehlers-Danlos syndrome. To read the full disclaimer, go here.

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Practicing Yoga with Joint Hypermobility Syndrome/EDS

The Hypermobile Yogi – Practicing Yoga with Joint Hypermobility Syndrome/EDS

Many people have flexible or loose joints. They’re the people, maybe like you, who did gymnastics or ballet when they were young and are “good” at yoga. Their joints move farther and more easily than most people’s joints, so they often can do tricks like bending their thumbs forward until they touch their forearms. Sometimes these people are called “double-jointed,” and some may even have dislocated or popped their joints out of the socket. The medical term for joints that move too far is hypermobility, and the word for joints that are too loose and move too easily is laxity. – Dr. Alan Pocinki 

Yoga International posted an article today called “Joint Hypermobility Syndrome: Yoga’s Enigmatic Epidemic?” (click on the article title to read the full article, or see link at the bottom of the page). For many hypermobile yogis, including myself, Yoga International’s article was a refreshing sigh of relief.

Finally! A factual article, stating the real genetic predisposition for joint hypermobility, and how it’s something that shouldn’t be glorified in yoga (or dance, or any other sport).

Additionally, the author mentions how she has approached practicing and teaching yoga safely – with appropriate modifications, as well as a ton of self-awareness. Most importantly, Joint Hypermobility Syndrome: Yoga’s Enigmatic Epidemic? discusses how joint hypermobility is SO MUCH MORE than “just loose joints.”

The author also shares her personal yoga class experience, a bit about her own journey to a diagnosis of Joint Hypermobility Syndrome (JHS) (commonly known now as “Ehlers-Danlos syndrome – Hypermobility Type” or HEDS), as well as her yoga practice philosophy.

“Socially and politically I’m left of liberal. But on the mat, in part because of my excessive flexibility, I’m a die-hard conservative. You could say I’m kind of a fuddy-duddy. “How long did it take you to do that?” wistful students have asked over the years when I sit cross-legged with ease. For many of them, their hips are so tight that they can’t even imagine being comfortable in that position. “I’ve always been able to do this,” I tell them, not wanting to misrepresent yoga’s capabilities. I’m not boasting. My mobility is pathological.”

What is joint hypermobility or hypermobility syndrome, and why is it so much than “just loose joints?” (AKA – A very real, multi-systemic & chronic medical condition)

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The difference between rotating too far and not

Several connective tissue disorders cause joint hypermobility. Ehlers-Danlos Syndrome is a “group of heritable connective tissue disorders that are caused by various defects in the collagen protein used to make our connective tissues. These disorders can cause a wide variety of complications throughout all body systems – Ehlers-Danlos Syndrome is very much a multi-systemic disorder. Based on recent research, the prevalence of EDS exceeds this number and could be as high as 1:100 to 1:200 people (Collins, 2015; Nielsen, 2013), or greater. Each type of EDS is characterized by a distinct problem in making or using one of the types of collagen. Collagen is the body’s most abundant protein and can be found in nearly every component of our bodies, from our ears, to our eyes and mouth, to our heart, surrounding our internal organs and veins, connecting our joints, in our bones and down to the tips of our toes. Collagen is a strong protein that provides both strength and elasticity to our tissues, as well as allows our tissues to be stretched safely without damage or without being stretched past a normal range. Ehlers-danlos Syndromes are structural problems caused by defects to the “glue” that holds our bodies together.”

Ehlers-Danlos Syndrome (EDS), and more specifically, Ehlers-Danlos Syndrome – Hypermobility Type (HEDS), are considered the most common causes of joint hypermobility. Some specialists who research and treat patients with EDS have come to the agreement and belief that Joint Hypermobility Syndrome and Ehlers-Danlos syndrome – Hypermobility Type, are one in the same condition; however, the jury is still out officially, and until we can genetically test every person with joint hypermobility, we will not know for sure. Though, I’m positive incredible strides will be made at the EDS 2016 International Symposium in May 2016.

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Furthermore, Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome – Hypermobility type and frustrations that so many its patients face, was explained in a paper published by Dr. Alan Pocinki, a physician well-known in the EDS community and who practices in the Washington, DC area, called ‘Joint Hypermobility and Joint Hypermobility syndrome’ – the same paper quoted in the Yoga International article.

“Experts estimate that up to 10% of the general population may have some degree of hypermobility, with women affected about three times more often than men. Most hypermobile people do not develop any problems from their loose joints, but some suffer chronic pain and other symptoms. Those who do suffer chronic joint pain and other symptoms related to their hypermobility or to the looseness of other tissues that often accompanies hypermobility have a condition called joint hypermobility syndrome (JHS).

Often, people who suffer from hypermobility syndrome are called hypo- chondriacs or lazy because they avoid many everyday activities, because these activities that cause them pain. Most of them don’t look sick and, as a result, friends, colleagues, and even doctors can be unsympathetic. Furthermore, they may spend years unsuccessfully searching for the cause of their chronic pain and other symptoms because many doctors are unfamiliar with hypermobility syndrome and its complex set of symptoms. Such long delays and lack of understanding can lead to frustration (with doctors and with daily life), anger, anxiety, and depression.”

To read the full post that was quoted above explaining what EDS is, go to: What is Ehlers-Danlos Syndrome?

Consequently, to practice yoga safely with hypermobility, you must be consciously conservative. What was once a “no-no” for those with EDS/HEDS/JHS, is proving to be quite the opposite. Taking classes with a yoga instructor who is also hypermobile, or who has knowledge in instructing the hypermobile yogi, such as the author of the post by Yoga Journal, can be instrumental in understanding how to not “go there” in certain positions.

”I am what I call a “tight, bendy person.” My joints are quite mobile—hypermobile—but my muscles are tight, with chronic knots. I’m careful when I practice yoga—with myself and with my yoga students—but am perpetually nursing one ache or another.”

Yes, yes and yes!!! It’s as if the hypermobile yoga Gods are finally coming together, to help those who are interested in yoga, but have not been not to practice it, and support all of us hypermobile yogis, who have been practicing yoga for many years (and with great success!)

The author goes on to explain in great detail how joint hypermobility is so much more than “just loose joints.” She also quotes Dr. Alan Pocinki in her article:

“In yoga class, those who have difficulty touching their toes may feel their lack of flexibility as a liability, and of course it can be. However, while inadequate range of motion isn’t optimal, it’s not nearly as perilous as excessive range of motion.

People with JHS often suffer from musculoskeletal and joint pain and soft tissue injuries like strains, sprains, tendonitis, and dislocations. Because our ligaments are unstable, we have an increased tendency to have scoliosis, TMJ, spinal disc problems, flat feet, and headaches. Dr. Alan Pocinki, an MD who practices in Washington D.C.’s metro area, and who has written what is in my opinion a groundbreaking article about JHS, explains: “Because…the ligaments [are]…too loose and therefore cannot do their job well, the muscles…are forced to do more of the work…than they are meant to do, so they become strained.”

To read Dr. Pocinki’s full article titled ‘Joint Hypermobility and Joint Hypermobility Syndrome’ click here.

If yoga has always been “easy” for you, learning more about Ehlers-Danlos syndrome – Hypermobility Type (HEDS)/Joint Hypermobility Syndrome (JHS) may be something to consider. As mentioned above, HEDS and JHS are regarded as one in the same condition, presenting with a broad spectrum of varying signs and symptoms. Make sure that the information you read is from a reputable source, such as the Ehlers-Danlos National Foundation (EDNF), EDS UK, or another well-known Hypermobility & EDS organizations. Strength/Flexibility/Health/EDS and EDS Wellness are great too!

A few more key points to remember:

– Several genetic connective tissue conditions cause joint hypermobility; Ehlers-Danlos Syndrome – Hypermobility Type (HEDS) is considered the most common cause of joint hypermobility.
– Hypermobility and flexibility are not one in the same; however, both terms are often used interchangeably.
– You do not have to be flexible to be hypermobile. In fact, there seems to be an equal number of those who have HEDS or another type of EDS, who are “stiff” and not so flexible. There’s even a type of EDS called, Ehlers-Danlos Syndrome – Musculocontractural type. EDS Musculocontractural type presents exactly as it sounds – a ton of muscle contractors or spasms. Quite the opposite of being flexible, yet the individuals who are affected are both stiff and hypermobile.
– You can also be flexible, but not hypermobile.
– There are several types of yoga, and all kinds of yoga practice can be modified.
– Finding the kind of yoga practice that works best for your body and your particular case of hypermobility syndrome/Ehlers-Danlos syndrome is critical. Doing so will ensure that you can learn how to practice yoga safely, increase joint strength and stability, as well as enjoy the countless mind/body benefits that so many hypermobile yogis enjoy.

To read more about Yoga & Hypermobility, as well as find resources on how to practice yoga safely, go to:

Yoga and Hypermobility – Managing Chronic Pain and Joint Stabilization with Ehlers-Danlos Syndromes/Hypermobility Syndrome

Interested in learning more about integrative approaches to living well with Ehlers-Danlos Syndrome and its comorbid conditions? If so, please visit: Strength/Flexibility/Health/EDS Additionally, if you like what you read and are interested in staying updated on posts related to practicing yoga safely with joint hypermobility, such as from Ehlers-Danlos syndrome (EDS) and related conditions, please subscribe here.

Questions? Feel free to send me an email: info@hypermobileyogi.com, or use the contact form at the bottom of this post.

Link to original article published by Yoga International: https://yogainternational.com/article/view/joint-hypermobility-syndrome-yogas-enigmatic-epidemic?utm_content=buffer4221f&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

This post was originally posted on Strength/Flexibility/Health/EDS; however, Strength/Flexibility/Health/EDS is currently being updated and prepared to relaunch as the first and ONLY digital wellness magazine for those living with Ehlers-Danlos syndrome, other hypermobility syndromes, and related conditions. ‘What is Ehlers-Danlos syndrome (EDS)?’ article reposted with permission of the original author.

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