mcas

Travel comes with a lot of uncertainty: flights get canceled, hotel reservations are lost, luggage never turns up. But add the complications of traveling with a chronic disorder like Ehlers-Danlos Syndrome, and voyaging becomes even more complicated.

How can you plan for contingencies, guard yourself against flares, and still have a fantastic time while traveling? The Bendy Bodies team shares their favorite tips on traveling during this round table discussion. 

We share suggestions for actions to take leading up to the trip, reveal items we cannot live without on a trip, and look at ways to combat the effects of travel on a bendy body. 

Dr. Bluestein gives advice on preparing for traveling without your “pit crew”. Jennifer Milner addresses how to stay active on the trip without overdoing it, and Kristin Koskinen shares her top three tips for finding food to support your nutritional needs while away from your favorite grocery stores.

The team offers their best all-around travel tips and advice for planning - as well as knowing that if things go awry, it will be ok!

For anyone planning to travel soon, this episode is so packed with tips that you’ll find yourself taking notes while you listen!

Learn more about Jennifer Milner, NCPT, Kristin Koskinen, RDN, and Linda Bluestein, MD.  

PS:  Do not transport controlled substances across state (or country) lines outside of their original container, as that is illegal.  If you need a smaller container, ask your pharmacist.  --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Symptomatic joint hypermobility can be difficult to understand and can present in so many different ways. Recently, Victoria Daylor, Dr. Cortney Gensemer, Dr. Russell Norris, and Dr. Linda Bluestein published a CME two-part series titled “Hope for Hypermobility - An Integrative Approach to Treating Symptomatic Joint Hypermobility”. We were able to sit down with Dr. Gensemer, Ms. Daylor, and Dr. Bluestein to discuss their research and the results.

They share how the collaboration came about and the developmental process they went through. The co-authors reveal their intentions behind the articles, and three things they want people to know about symptomatic joint hypermobility (SJH).

The panel of guests discuss what they see for the future of joint hypermobility and related conditions, and stress the importance of properly done research. Written to be accessible both for people with SJH and medical professionals, these articles may well be a defining reference for many people in the future!

With limited-time free access to Part 1 and Part 2 of this peer reviewed series, you will want to dive into these papers and share with others as soon as possible!

.

.

.

.

.

#Hypermobility #ChronicPain #ConnectiveTissueDisorder #JointSupport #MedicalResearch #JointPain #SymptomManagement #Healthcare #PatientEducation #DoctorPatientRelationship #HopeForHypermobility #KnowledgeIsPower #Education #Scientist #WomenInStem #DisabledInStem --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Eating disorders are complicated and not uncommon in artistic athletes. Common comorbidities of symptomatic joint hypermobility (SJH), like mast cell activation disorder (MCAD) or gastroparesis, may contribute to disordered eating, which can spiral into an eating disorder. For years, eating disorders have been stigmatized and dismissed by many in the health community.

To discuss this difficult topic, Bendy Bodies sat down with Dr. Jennifer Gaudiani, MD, CEDS-S, FAED, and founder of the Gaudiani Clinic for Eating Disorders.

Dr. Gaudiani shares how she became so passionate about caring for this complex population and the importance of understanding her patient’s stories. She talks about why there’s such a stigma around eating disorders and how she’s working to change that.

We discuss why this topic is so important for those with SJH and cover possible eating disorder mimickers. We break down definitions and explore possible predictors of eating disorders.

Dr. Gaudiani shares the aspects of treatment that she has found vital, and offers tips on how to speak to someone you suspect may have an eating disorder. Finally, she reveals ways to find experts for getting the help needed for an eating disorder.  Learn more about the Gaudiani Clinic here.  

For physicians, dance teachers, coaches, and anyone struggling with an eating disorder, this episode is a valuable look at a difficult topic.  

.

.

.

.

.

#MentalHealth #BodyPositive #Nutritionist #DoctorsOfIG #IntuitiveEating #EDWarriors #Recovery #SportsNutrition #ChronicIllness #EatingDisorders #PlantBasedNutrition #MentalHealthMatters #NutritionMatters #InvisibleIllness #AntiDiet #AntiDietCulture --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Upper cervical instability (UCI) occurs quite commonly in the mild form and more rarely in the severe form in those with symptomatic generalized joint hypermobility (S-GJH).  Both can be impactful and are frequently missed.  An international team of physical / physiotherapy clinicians and a S-GJH expert rheumatologist recently published expert consensus recommendations for screening, assessing and managing patients with UCI associated with S-GJH.  Bendy Bodies sat down with first author, Leslie Russek, DPT, PhD, to discuss this important paper.  

Hypermobility (too much range of motion) is different from instability (difficulty controlling motion at the joints).  UCI, upper cervical instability, means that the muscles and nerves lack the ability to appropriately control movement at the joint and sense where the joint is in space.  When UCI is severe it can be debilitating.  Except in the most extreme forms of UCI, conservative (ie: non-surgical) therapies are usually considered first.  Improving joint stability is the goal and Dr. Russek explains what patient factors are important to consider in determining treatment strategy.  

Dr. Russek explains the difference between “highly suggestive” and “common” symptoms as well as musculoskeletal UCI vs neurological UCI.  She describes the three levels of irritability and how those should be approached in clinical practice.  Yellow and red flags in the history and the physical examination are addressed.

Whether you are someone who suspects upper cervical instability or treats them, this is an episode you will not want to miss.  

Learn more here. 

Hashtags: #CervicalSpineInstability #EhlersDanlosSyndrome #ChronicIllness #SpineInstability #ZebraSurvivor #ChronicPain #CervicalSpinalFusion #InvisibleIllness #Hypermobility #SpineHealth #hEDS #EDSawareness #ChronicPainWarrior #SpineFusion #ButYouDontLookSick #Instability #HSD --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Thriving as a professional artist with Ehlers-Danlos Syndrome can be challenging.  Finding a balance between pushing yourself physically and listening to your body when it needs rest is difficult when you are part of a company.  How do you push yourself to the edge of your limits, but not over them?  We asked Jenelle Manzi, a professional dancer with New York City Ballet, this very question.  enelle shares her stories of growing up dancing with EDS. She describes her journey as a young professional, figuring out how to work with a chronic illness, and talks through her early injuries and what she learned from them. Jenelle opens up about hitting a wall with her EDS, and how she took time to get her health under control and figure out what works for her. She shares how her health journey inspired her to start her company Get Golden, and goes deep into her methods for staying at an elite performance level while maintaining long-term health. 

Learn more about Jenelle here.  . . . . . 

#EDSawareness #BalletWithEDS #ChronicIllnessWarrior #EhlersDanlosSyndrome #DancerWithEDS #SpoonieBallet #DisabilityInclusion #HealthJourney #InvisibleDisability #BalletDancer #DisabilityAdvocate #BalletInspiration #ChronicPainLife #HealthStory #EDSsupport  #hEDS --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Thriving as a professional artist with Ehlers-Danlos Syndrome can be challenging.  Finding a balance between pushing yourself physically and listening to your body when it needs rest is difficult when you are part of a company.  How do you push yourself to the edge of your limits, but not over them?  We asked Jenelle Manzi, a professional dancer with New York City Ballet, this very question.  enelle shares her stories of growing up dancing with EDS. She describes her journey as a young professional, figuring out how to work with a chronic illness, and talks through her early injuries and what she learned from them. Jenelle opens up about hitting a wall with her EDS, and how she took time to get her health under control and figure out what works for her. She shares how her health journey inspired her to start her company Get Golden, and goes deep into her methods for staying at an elite performance level while maintaining long-term health. 

Learn more about Jenelle here.  . . . . . 

#EDSawareness #BalletWithEDS #ChronicIllnessWarrior #EhlersDanlosSyndrome #DancerWithEDS #SpoonieBallet #DisabilityInclusion #HealthJourney #InvisibleDisability #BalletDancer #DisabilityAdvocate #BalletInspiration #ChronicPainLife #HealthStory #EDSsupport  #hEDS --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Chiropractic care has been around for over 100 years, but many people don’t quite know what it entails. Artistic athletes may be told to add regular chiropractic visits to their regimen to help relieve pain without really understanding why. 

How does a method best known for joint manipulation work for those with hypermobile bodies? Is it a valid treatment option? And what exactly is it, anyway?

Dr. Carrie Skony is a certified chiropractic sports physician and owner of Perform Active Wellness Dance Medicine. Specializing in dancers, Dr. Skony sees many hypermobile bodies and sat to talk with us about how people with hypermobility may (or may not) benefit from seeing a chiropractor.

Dr. Skony defines chiropractic care for us, outlining the broad spectrum of options that fall under its umbrella. She covers what sort of issues may cause people to seek out chiropractic care, different kinds of chiropractic care people may encounter, as well as common misconceptions about chiropractors.

Dr. Skony cautions against indiscriminate joint manipulation, and describes how she changes her treatment approach when working with someone with symptomatic hypermobility. 

She talks through her method of working with dancers through a variety of modalities, including hands-on treatments, strengthening exercises, and more.

Common comorbidities in hypermobile patients and how that may change Dr. Skony’s treatment approaches are explained, and she offers tips on how to find a good chiropractor in your own area. Finally, she shares her desire to educate dance instructors on working with hypermobility for future generations of dancers.

If you’ve been skeptical of chiropractic care, unsure of what it is, or a huge fan of it, this episode goes deep on the topic in an easy-to-understand way.

Learn more about Dr. Skony here.
.

.

.

.

#Chiro #ChiropracticCare #Adjustment #JointManipulation #Hypermobility #Hypermobile #hEDS #EDS #Modalities #LowBackPain #Chiropractors #Subluxation #Dislocation #JointInstability #ChiropracticAdjustment #Headaches #Doctor #ChronicIllness --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Living with a chronic illness like Ehlers-Danlos Syndrome (EDS) can be demoralizing. You may not have access to the care you need, loved ones do not get it, and loneliness can be a reality for so many people.

Gigi Robinson was diagnosed with EDS at 11 years old, and one of the lucky ones to receive support and care from a very early age. Even so, heading off to college and needing to advocate for herself was a difficult transition. As she moved into adulthood, her natural passion for learning turned into a desire to help others who experience some of the same issues. She quickly became an outspoken advocate for Gen Z in particular, but for anyone struggling with chronic illness, body image issues, and more.  She used her platform as a Sports Illustrated swimsuit model to shine light on EDS and body dysmorphia. Now a successful podcast host and powerful social influencer, Gigi speaks around the globe on these topics, educating and encouraging people.

Bendy Bodies recently caught up with Gigi and chatted about her life as an advocate with a chronic illness.

Gigi shares her early experiences with EDS, her diagnosis, and how she learned to advocate for herself in a school setting. Gigi opens up about being a swimsuit model while advocating for body positivity, and describes her passion for speaking up for Gen Z.

Gigi dives into her mental health advocacy, reveals her tips for pacing herself in her daily life, and offers advice to caregivers of people with chronic illnesses, as well as encouragement to those struggling with a chronic illness.

An inspiring and uplifting story of positivity and encouragement, Gigi’s conversation is sure to inspire others to look within themselves for strength and ways to shine their own lights for others.

.

.

.

.

.

#ChronicIllness #Advocate #hEDS #EhlersDanlos #MentalHealth #BodyImage #DisabledModel #BodyDysmorphia #Hypermobility #RepresentationMatters #BodyPositivity #GenZ #InclusiveFashion #AbilityNotDisability --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Headaches and migraines are common in many chronic illnesses, and people with hypermobility often struggle with chronic head pain for a variety of reasons. But what is the difference between migraine and other types of headache? How do you get properly evaluated?  What are the best treatments?

Bendy Bodies spoke with neuro-ophthalmologist Rudrani Banik, MD in an effort to understand this complex topic. A fellowship-trained neuro-ophthalmologist certified in functional medicine, Dr. Banik specializes in headaches and migraines and has worked with many patients with Ehlers-Danlos syndromes and other connective tissue disorders.

Dr. Banik describes how she integrates her vast training to evaluate and treat her patients. She explains the difference between headache and migraine, and shares the criteria for a migraine diagnosis.

Dr. Banik talks through common causes of tension headaches as well as triggers for migraines, and suggests steps that are often helpful for migraines. She offers tips on how to get proper care, talking through her pharmacologic and nutritional supplement approaches.  She reveals common lifestyle choices that may greatly impact headaches and migraines covering conditions like idiopathic intracranial hypertension, CSF leak, Chiari malformation as well as vestibular, ocular, and abdominal migraine.

For doctors, physical therapists, and anyone suffering from chronic head pain, this episode contains lots of concrete tips and suggestions for finding a path to relief.

.

.

.

.

.

#Headaches #Migraine #hEDS #ConnectiveTissueDisorder #JointHypermobility #ChronicIllness #MigraineRelief #ChronicPainAwareness #HeadacheRelief #MigraineNutrition #Neuro #Diagnosis --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Life with multiple chronic illnesses is physically and mentally challenging. Feelings of exhaustion and emotional fatigue crowd in with physical symptoms and can be overwhelming in your daily life.

How do you find balance? How do you find a way forward and regain joy in your life?

We posed these questions to Keeya Steel, founder of the popular Hells Bells and Mast Cells on social media. As someone who lives with POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), and hEDS (hypermobile Ehlers-Danlos Syndrome), she is all too experienced at trying to find that balance.

Keeya shares her journey through a childhood peppered with “you’re making this up” accusations, as well as her diagnoses as an adult that brought relief and despair in equal measures.

Keeya speaks openly about how humor helped her find her way forward through some dark days, and her decision to share that humor with the world. She shares her emotional journey to accepting her chronic illnesses and disabilities.

Keeya also explains the online course she created with Dr. Linda Bluestein on optimizing medical appointments with complex illness, and why she wanted to share that course with others. Keeya reveals tips on getting the most out of doctor’s appointments and discusses her experiences with finding new medical professionals.

“In the end,” Keeya says, “I want people to be more open to hope and future joy.”

An inspiring episode for us all so don’t miss it!

More information about Keeya can be found on her website.  

.

.

.

.

.

#Hope #Resilience #Disabled #ChronicIllness #DespiteTheOdds #PotsSyndrome #MastCells #EhlersDanlos #hEDS #Advocacy #ChronicIllnessCommunity #MedicalProfessionals #MedicalGaslighting #ChronicIllnessSupport #Accessibility --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Dance injuries can be career ending especially for those with joint hypermobility. Competition dance or precision performance can introduce a whole new set of challenges, whether it’s dancing as part of a team, competitive cheer, or synchronized swimming. Controlling hypermobility and matching lines requires strength, specific coaching, and proprioceptive awareness that’s not always second nature to the performer.

We spoke with Monica Lorenzo, the first NBA entertainment athletic trainer who pioneered sports medicine for these performing artists. Monica has worked with many dance teams including the Rockettes, the Knicks City Dancers and the Golden State Warriors Dance Team.

Monica shares her own journey from dancer to athletic trainer and describes the differences between precision dance and other forms of dance. She explains why precision dance may be challenging for the hypermobile dancer, and shares her strategies for staying healthy over a long performance season.

Monica reveals how she prepares dancers for working on less-than-ideal surfaces, and offers advice on how dancers might prepare for a career in precision dance. Finally, she shares her secret of how she builds individual programs within a group training setting.

Full of helpful advice for artists, athletic trainers, coaches, and more, you won’t want to miss this episode.

More information about Monica can be found at https://romofit.com/.

Check out these episodes about fatigue we mentioned during this conversation:

https://www.hypermobilitymd.com/bendybodiespodcast/episode/1c065966/46-fueling-against-fatigue-with-kristin-koskinen-rdn

https://www.hypermobilitymd.com/bendybodiespodcast/episode/33cfae69/45-understanding-fatigue-with-alan-pocinki-md

OR

Listen to the episodes about fatigue we discussed:

https://www.hypermobilitymd.com/bendybodiespodcast/episode/1c065966/46-fueling-against-fatigue-with-kristin-koskinen-rdn

https://www.hypermobilitymd.com/bendybodiespodcast/episode/33cfae69/45-understanding-fatigue-with-alan-pocinki-md

.

.

.

.

#Rockettes #KnicksCityDancers #Knicks #GSWarriors #nba #dancers #DanceTeam #AthleticTrainer #SportsMedicine #Performance

#BendyBuddy #DancerLife #DanceDance #JenniferMilner #HypermobilityMD #Bendy --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Dance injuries can be career ending especially for those with joint hypermobility. Competition dance or precision performance can introduce a whole new set of challenges, whether it’s dancing as part of a team, competitive cheer, or synchronized swimming. Controlling hypermobility and matching lines requires strength, specific coaching, and proprioceptive awareness that’s not always second nature to the performer.

We spoke with Monica Lorenzo, the first NBA entertainment athletic trainer who pioneered sports medicine for these performing artists. Monica has worked with many dance teams including the Rockettes, the Knicks City Dancers and the Golden State Warriors Dance Team.

Monica shares her own journey from dancer to athletic trainer and describes the differences between precision dance and other forms of dance. She explains why precision dance may be challenging for the hypermobile dancer, and shares her strategies for staying healthy over a long performance season.

Monica reveals how she prepares dancers for working on less-than-ideal surfaces, and offers advice on how dancers might prepare for a career in precision dance. Finally, she shares her secret of how she builds individual programs within a group training setting.

Full of helpful advice for artists, athletic trainers, coaches, and more, you won’t want to miss this episode.

More information about Monica can be found at https://romofit.com/.

Check out these episodes about fatigue we mentioned during this conversation:

https://www.hypermobilitymd.com/bendybodiespodcast/episode/1c065966/46-fueling-against-fatigue-with-kristin-koskinen-rdn

https://www.hypermobilitymd.com/bendybodiespodcast/episode/33cfae69/45-understanding-fatigue-with-alan-pocinki-md

OR

Listen to the episodes about fatigue we discussed:

https://www.hypermobilitymd.com/bendybodiespodcast/episode/1c065966/46-fueling-against-fatigue-with-kristin-koskinen-rdn

https://www.hypermobilitymd.com/bendybodiespodcast/episode/33cfae69/45-understanding-fatigue-with-alan-pocinki-md

.

.

.

.

#Rockettes #KnicksCityDancers #Knicks #GSWarriors #nba #dancers #DanceTeam #AthleticTrainer #SportsMedicine #Performance

#BendyBuddy #DancerLife #DanceDance #JenniferMilner #HypermobilityMD #Bendy --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

For most artistic athletes, competition is a part of life. Whether you’re a dancer, skater, gymnast, or cheerleader chances are you’re competing at some point.

Competitions can be grueling, multi-day events consisting of 14-hour days, multiple performances, and little access to fresh whole foods. So how do you prepare for a competition, and what can you do during the event to make sure you are at the top of your game and come out of it injury-free?

We decided to approach this topic from a multi-disciplinary angle, so Jennifer, Dr. Bluestein, and resident Bendy Bodies nutrition expert, Kristin Koskinen, all sat down for a round table discussion on this important topic.

We talk through a timeline of preparation before the big event, and ways to make sure you’re heading into your competition as healthy and prepared as possible. Nutrition, training, sleep, and more are discussed as we sketch out the ways to make the most of your preparation time.

Kristin offers practical advice on ways to fuel healthily during the competition, often without access to refrigerators or even a true meal break.

Dr. Bluestein shares ways to be prepared for any issues that might come up physically, and Jennifer reveals her top competition-day tips.

Finally, we look at the importance of recovering after a competition. How we replenish our body’s nutrients, ways to approach constructive rest and gradual return to training, and more are shared as we offer ways to be the healthiest competitive artist you can be.

Share this with parents of young artistic athletes, bookmark for yourself as a competitor, and pass it on to studio owners, coaches, physical therapists, and more!

.

.

.

.

.

#CompetitionDay #PreparingForCompetitions #Nutrition #NutritionalTips #HealthyFoodAdvice #Nutrients #NutritionEducation #Sleep #SleepTips #SleepHealth #TrainingAdvice #TrainingDay --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message

Hypermobility disorders can lead to health complications that may require surgery. Joint hypermobility and associated conditions can present  complications for  surgery, anesthesia, and more. If you’re anticipating  surgery, how can you, your surgeon and anesthesia care team be as prepared as possible for those hypermobile “quirks”?

Bendy Bodies founder Dr. Linda Bluestein spent years in the operating room as a top anesthesiologist. We asked her for advice on this often-overlooked aspect of dealing with symptomatic joint hypermobility.

Dr. Bluestein discusses the possible medication reactions that often accompany connective tissue disorders and associated conditions. She talks about ways to prepare for the pre-operative assessment, and outlines what medical conditions should be shared in advance with the anesthesia team.

Dr. Bluestein explains the different types of anesthesia and why that information is important, and shares her observations about people with joint hypermobility and their potential complications.

Finally, Dr. Bluestein offers suggestions for how to share your concerns with the surgery team, from limb positioning to avoid  dislocations, cervical spine and jaw problems that may influence airway management and so much more.

Whether you’re part of a surgical team or preparing to undergo your own surgery, you’ll find helpful advice here to prepare you for next steps.

.

.

.

.

.

#Anesthesia #AnesthesiaLife Anesthesiologist #LocalAnesthetic #LocalAnesthesia  #hypermobilitytreatment #mobility #ehlersdanlos #spinalstabilization #butyoudontlooksick #hypermobilitypain #spooniesupport #hypermobilityrehabilitation #hypermobilityspectrum #bendy #invisibledisability #JenniferMilner  #hypermobilitysyndrome #hypermobilityhacks #HypermobilityMD #chronicconditions

For an even deeper dive, read this peer-reviewed journal article co authored by Dr. Bluestein and Dr. Pradeep Chopra:

Perioperative Care in Patients with Ehlers Danlos Syndromes

https://www.scirp.org/journal/Paperabs.aspx?PaperID=97524 --- Send in a voice message: https://podcasters.spotify.com/pod/show/bendy-bodies/message