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Mother with rare ‘very bendy’ joints condition unable to push daughter on swing due to risk of dislocating joints

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Living with hypermobile Ehlers-Danlos syndrome (hEDS) can be a daily struggle, as Punteha discovered after years of misdiagnoses and unexplained pain. Partial dislocations in various joints were a regular occurrence for Punteha, leading to pain, weakness, and inflammation. It wasn’t until she stumbled upon a TikTok video about hEDS that she finally found an explanation for her symptoms.

Reflecting on her childhood experiences of popping her knees back in place and enduring frequent joint injuries, Punteha realized that these issues were not normal. Despite years of seeking medical help and undergoing surgeries, no doctor was able to identify the root cause of her struggles. It wasn’t until she presented a list of her symptoms and the GP toolkit from EDS Support UK to her doctor that she was finally referred to a rheumatologist.

In 2023, Punteha received a confirmed diagnosis of hEDS after undergoing the Beighton test and a thorough examination. This connective tissue disorder affects collagen, leading to symptoms such as joint hypermobility, joint pain, fatigue, and digestive issues. While the estimated prevalence of hEDS is one in 500, many cases go undiagnosed or misdiagnosed due to the complex nature of the condition.

The lack of awareness and understanding of hEDS within the healthcare profession is a significant challenge for patients seeking help. Many individuals, like Punteha and others, have faced dismissive attitudes from doctors and a long road to obtaining a proper diagnosis. Without timely intervention, hEDS can lead to chronic pain, mobility issues, and psychological impacts on patients.

While early detection of hEDS can lead to more effective treatment strategies, the current healthcare system in the UK faces limitations in providing specialized care for this condition. Patients often endure long waits for appointments and struggle to access appropriate services tailored to their needs. Dedicated NHS pathways for hEDS management could significantly improve the quality of life for affected individuals.

Despite the challenges of living with hEDS, there is hope for better recognition and support for patients in the future. Advocacy efforts by organizations like Ehlers-Danlos Support UK aim to raise awareness about hEDS and push for improved healthcare services. By educating healthcare professionals, providing resources for patients, and advocating for dedicated care centers, the aim is to reduce suffering, improve outcomes, and enhance the overall well-being of individuals with hEDS.

In conclusion, the journey of living with hEDS is filled with obstacles, from delayed diagnoses to inadequate treatment options. However, with increased awareness, better healthcare pathways, and improved access to specialized care, individuals like Punteha and others can navigate their hEDS journey with more support and understanding. By sharing their stories and advocating for change, they are working towards a future where hEDS is recognized, diagnosed, and managed effectively within the healthcare system.

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