Guest blog entry written by February's guest lecturer, Tasha Searles, MSN, APRN, AGCNS-BC, (they/she), of Creative Thriving:

If you are a clinician caring for folks who are trans or gender diverse, or are trans or gender diverse yourself, you may have noticed a seemingly high overlap with a variety of complex chronic health conditions & neurodivergence!

Ehlers Danlos Syndrome (EDS) and hypermobility is particularly prevalent in the trans and gender diverse community.

• A 2022 study showed 17% of patients at an Ehlers Danlos Syndrome clinic reported gender dysphoria (61% of these folks indicated they were transgender, and 14% indicated they were non binary). 

Autism & ADHD have been shown to have higher prevalence in both those who are hypermobile, and in those who are trans or gender diverse. 

• A 2020 study showed those who do not identify as the sex assigned at birth are 3-6 times more likely to be autistic, compared to cisgender folks. 
• Another study from 2022 showed those with a diagnosis of ADHD and/ or Autism have over double the prevalence rate of hypermobility compared to individuals without an ADHD or Autism diagnosis.

Ehlers Danlos Syndrome is a group of genetic connective tissue conditions that impact all body systems, the most common type being hypermobile Ehlers Danlos Syndrome (hEDS). There are many folks who may not quite meet hypermobile ehlers danlos syndrome criteria, but still have hypermobility and associated symptoms, this is often called Hypermobility Spectrum Disorder (HSD). You may also see the term Symptomatic Joint Hypermobility, this is used more in recent research to encompass those with hypermobility + symptoms who may have hEDS, HSD, or not yet be diagnosed. 

Those with Ehlers Danlos Syndrome and symptomatic joint hypermobility experience a variety of other conditions and symptoms at higher rates than the general population. 

Common symptoms may include: 

• Chronic pain & fatigue
• Frequent injuries
• Joint dislocations or instability
• Unrefreshing sleep
• Dizziness, feeling faint, or fainting
• Low blood pressure
• Racing or pounding heart
• Soft or velvety skin, stretchy skin, slow wound healing
• Anxiety, depression, panicked feelings
• Hives or itching, allergic reactions, flushing of skin
• Sensitive to foods, chemicals, or environment
• Abdominal bloating or cramping, heartburn
• & more

Two conditions that commonly co-occur with symptomatic joint hypermobility are Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). 

Mast cells being overactive can contribute to a variety of systemic symptoms including allergic symptoms, gastrointestinal complaints, fatigue, dizziness, palpitations, and pain.

POTS can also present with systemic symptoms, many of which overlap with MCAS. Dizziness, fatigue, palpitations, tachycardia, presyncope, gastrointestinal problems, and headaches are common.

Many symptoms commonly associated with EDS, such as joint pain and fatigue, can be improved with treatment of co-occurring disorders, such as MCAS & POTS. Autoimmunity, infections, nutritional deficiencies, environmental factors such as mold, and life stressors often also play a role. 

Awareness of these commonly co-occuring conditions and how they may be interrelated is often a turning point for folks looking for answers in improving their health symptoms. Having clinicians who can take the time to listen, be open minded, curious, and willing to learn is another important piece. So many folks with these conditions have encountered significant medical trauma on their journey towards an accurate diagnosis, so finding a trustworthy clinician is truly gold.

So where do you start with learning more and starting to feel better? Or learning how to support your patients better? Here are a few of my favorite resources…

Where to find a provider: 

• Ehlers Danlos Society Healthcare Provider Directory: https://www.ehlers-danlos.com/healthcare-professionals-directory/ 

• Local support groups on facebook also often have local provider lists! Most allow you to join even if you don’t have a diagnosis, as it is a way to learn more and find providers that can hopefully help you.

• Providers that commonly see folks with Hypermobility & Ehlers Danlos Syndrome generally often know about commonly co-occurring conditions, and often vice versa. 

General resources:

Books: Disjointed, The Dysautonomia Project, The Trifecta passport

Podcasts: Bendy Bodies with the Hypermobility MD, Hypermobility Happy Hour, The POTScast, Divergent Conversations

Websites: The Ehlers-Danlos Society , EDS Awareness/ Chronic pain partners, Dysautonomia International, Standing up to POTS, The Mast Cell Disease Society, All Brains Belong VT: Everything is connected to everything

Videos: The Ehlers-Danlos Society You tube, Dysautonomia International -you tube 

Tools for clinicians:

hEDS 2017 Diagnostic Criteria

https://www.ehlers-danlos.com/wp-content/uploads/2019/09/hEDS-Dx-Criteria-checklist-1-Fillable-form.pdf

Hypermobility Screening Tool (HST) 

https://www.orthopt.org/uploads/Management_of_Hypermobility.pdf

Mast Cell Mediator Release Syndrome Questionnaire 

https://www.humangenetics-bonn.de/wp-content/uploads/2024/01/Fragebogen-englisch-1-15-20-LW-GJM.pdf

Malmo POTS Symptom Score

https://onlinelibrary.wiley.com/doi/full/10.1111/joim.13566

Compass-31 (Composite Autonomic Symptom Score)

https://www.hattrevaluationtools.eu/compass-31/ 

Additional resources available at: https://www.creativethrivingllc.com/resources 

References:

Joint Hypermobility Links Neurodivergence to Dysautonomia & Pain by Csecs, Iodice, et. al., 2022 https://doi.org/10.3389/fpsyt.2021.786916

The Relationship between Generalised Joint Hypermobility and Autism Spectrum Disorder in Adults: A Large, Cross-Sectional, Case Control Comparison by Glans, Thelin, et. al., 2022 doi: 10.3389/fpsyt.2021.803334 

Association between adult attention-deficit hyperactivity disorder and generalised joint hypermobility: A cross-sectional case control comparison by Glans, Thelin, et. al., 2021 doi: 10.1016/j.jpsychires.2021.07.006

Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study by Kindgren, Perez, & Knez 2021 https://doi.org/10.2147/NDT.S290494

The Relationship between Autism & Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders by Casanova, Baeza-Velasco, et. al., 2020 https://doi.org/10.3390/jpm10040260 

Gender Dysphoria in adolescents with Ehlers-Danlos syndrome by Jones, Black, et al., 2022 doi: 10.1177/20503121221146074

Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience by Najafian, Cylinder, et al., 2022 

DOI: 10.20517/2347-9264.2021.89 

Hypermobile Ehlers-Danlos syndrome Clinical description and natural history (2017) doi: 10.1002/ajmg.c.31538 

Hypermobile Ehlers-Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes by Gensemer, Burks, et al. March 2021 doi: 10.1002/dvdy.220 

Hope for Hypermobility: Part 1—An Integrative Approach to Treating Symptomatic Joint Hypermobility by Daylor, Gensemer, Norris, & Bluestein March 2023 DOI:10.1097/01.TPM.0000924780.91929.b3

Hope for Hypermobility: Part 2—An Integrative Approach to Treating Symptomatic Joint Hypermobility by Daylor, Gensemer, Norris, & Bluestein April 2023 DOI: 10.1097/01.TPM.0000933968.28098.59

Frequency and Co-occurrence of Comorbidities in the Ehlers-Danlos Syndrome by Brock, Chopra, Maitland, Mills, & Francomano 2021 DOI:10.1016/S1096-7192(21)00387-5

Diagnosis of mast cell activation syndrome: a global "consensus-2" 

Afrin, Ackerley, Bluestein, et al., 2020 DOI: 10.1515/dx-2020-0005

Characterization of Mast Cell Activation Syndrome 

by Afrin, Self, Menk, & Lazarchick, 2017 doi: 10.1016/j.amjms.2016.12.013

Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature by Monaco, Choi, Uzeun, Maitland, & Riley, 2022 doi: 10.1007/s12026-022-09280-1