Welcome back to the Bendy Club blog! This week, we’re delving into the fascinating and complex topic of neurodivergence in HSD/EDS patients. Many people with Hypermobility Spectrum Disorder (HSD) or Ehlers-Danlos Syndrome (EDS) experience sensory issues that can significantly impact their daily lives. For those affected, understanding these sensory challenges is crucial for effective management and improved quality of life.
What is Neurodivergence?
Neurodivergence refers to the variation in neurocognitive functioning that diverges from what is considered typical. Conditions such as autism, ADHD, and sensory processing disorder often fall under the umbrella of neurodivergence. One way that neurodivergence can manifest in HSD/EDS patients is as heightened sensory sensitivity or difficulty processing sensory information.
Sensory Issues in HSD/EDS
Many HSD/EDS patients report experiencing sensory issues, which can include:
- Sensitivity to Light and Sound: Bright lights and loud noises can be overwhelming and lead to discomfort or even pain.
- Tactile Sensitivity: Certain fabrics or textures might feel extremely uncomfortable or irritating.
- Sensitivity to Smell and Taste: People may experience an aversion to certain smells or become overwhelmed with smells that others don’t even notice. This can also translate into issues with certain tastes.
- Proprioceptive Challenges: Difficulty in sensing body position and movement, leading to clumsiness or coordination issues.
- Vestibular Sensitivity: Issues with balance and spatial orientation can cause dizziness or motion sickness.
Addressing Sensory Issues
Recognizing and addressing sensory issues is key to enhancing the quality of life for HSD/EDS patients. Each person will have specific challenges and Here are some practical strategies:
- Create a Sensory-Friendly Environment: Adjust lighting, reduce noise levels, and choose comfortable clothing to minimize sensory overload. Also being mindful to limit strong smells like perfumes and detergents may help certain individuals.
- Use Sensory Tools: Items like noise-canceling headphones, weighted blankets, or fidget tools can help manage sensory input.
- Occupational Therapy: Working with an occupational therapist can provide strategies tailored to your specific sensory needs. Most providers will be more than happy to write an order for you to work with a licensed OT in your area.
- Mindfulness and Relaxation Techniques: Practices like deep breathing, meditation, and yoga can help regulate sensory responses and reduce anxiety.
- Routine and Structure: Establishing a predictable routine can help manage sensory sensitivities by reducing unexpected changes.
Real-Life Insight
One of our community members, Sarah, has HSD and experiences severe sensory issues, particularly with sound and touch. By incorporating sensory-friendly modifications into her daily life and working with an occupational therapist, Sarah has found ways to manage her sensory challenges effectively. Her story highlights the importance of understanding and addressing sensory issues to improve overall well-being.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with HSD/EDS and neurodivergence.
Connect with Us
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Ready to Take the Next Step?
For those seeking personalized guidance, our 1-on-1 coaching program offers tailored support to address your specific needs. With expert advice and a comprehensive plan, you’ll gain the tools and confidence to manage your neurodivergence and sensory issues effectively. Learn more and sign up here.
Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Occupational therapy. The Ehlers Danlos Society. (2024c, February 1). https://www.ehlers-danlos.com/occupational-therapy/
Passarello N, Tarantino V, Chirico A, Menghini D, Costanzo F, Sorrentino P, Fucà E, Gigliotta O, Alivernini F, Oliveri M, Lucidi F, Vicari S, Mandolesi L, Turriziani P. Sensory Processing Disorders in Children and Adolescents: Taking Stock of Assessment and Novel Therapeutic Tools. Brain Sci. 2022 Oct 31;12(11):1478. doi: 10.3390/brainsci12111478. PMID: 36358404; PMCID: PMC9688399. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9688399/
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.