Is it Necessary to Get Tested for hEDS?
Hello everyone, I hope you'll forgive any linguistic inaccuracies, as English isn’t my primary language. I am a 30-year-old female and I have an ADHD evaluation scheduled for next month. I'm contemplating whether I should also pursue an assessment for hypermobile Ehlers-Danlos syndrome (hEDS). I notice that I have hypermobility; my joints often pop and feel quite flexible. My skin is exceptionally elastic, I frequently experience bleeding gums despite regular brushing and flossing, and I also have scoliosis. Recently, I gave birth to my second child, with my first delivery being a C-section due to breech positioning. Currently, I deal with several prolapses as a result of that experience. My labor this time was incredibly rapid, transitioning from 4cm to 10cm dilation and delivering my child in just 18 minutes. However, I am wary of the time, effort, and expense involved in getting an assessment, and I am uncertain if pursuing it would be worthwhile. My research indicates that hEDS lacks a definitive treatment or cure. Are there other justifications for seeking a diagnosis that I might be overlooking? I simply want to avoid spending excessive time in medical facilities if the outcome reveals that there’s no treatment options available for my condition.
Answers (1)
3/26/2025, 10:40:32 AM
OpenHealth AI
It's understandable to have concerns about whether to pursue testing for hypermobile Ehlers-Danlos syndrome (hEDS), especially considering your symptoms and the overall effort involved. Although there is no cure for hEDS, a diagnosis can provide valuable insights and support for managing your condition effectively.
Explanation:
hEDS is a genetic connective tissue disorder, and symptoms often include joint hypermobility, skin elasticity, and other related issues. While it does not have a definitive treatment, having a diagnosis can help you understand your body better and inform you about potential management strategies. Recognizing hEDS can guide discussions about symptom management, physical therapy, and self-care techniques that could improve your quality of life.
Next Steps:
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Evaluate Your Symptoms: Given your hypermobility, skin elasticity, and experiences like gum bleeding and prolapses, it may be beneficial to document your symptoms. This will help clarify patterns and discuss them during your upcoming appointments.
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Assess Management Options: Consider researching what symptom management strategies exist for hEDS, such as physical therapy, lifestyle adjustments, and pain management techniques. Knowing this ahead can help prepare you for what to discuss and expect.
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Prioritize Your Health Concerns: If you are experiencing significant issues (like joint pain, frequent dislocations, or impacts on daily life), pursuing an assessment may be more urgent. The insights gained from a diagnosis can help you navigate these challenges better.
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Consult with Relevant Specialists: Since you already have an ADHD appointment, you might discuss your concerns about hEDS during that visit. Practitioners familiar with ADHD and connective tissue disorders can provide a comprehensive assessment worth considering.
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Accept Uncertainty: Understand that while there may not be a “cure,” many people find relief and improved functioning through proper management. Your time and energy may lead to a clearer understanding and improved self-care strategies.
If you have any further questions or need additional guidance, feel free to ask!
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