Imogene Newland's inspiring story highlights the challenges of Ehlers Danlos Syndrome and the importance of awareness.
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Understanding Ehlers Danlos Syndrome
Ehlers Danlos Syndrome (EDS) is a group of connective tissue disorders that can lead to a variety of health issues, including joint hypermobility, skin elasticity, and vascular complications. The condition often goes undiagnosed for years, with many patients facing skepticism from healthcare professionals.
Imogene Newland’s story is a poignant example of the struggles faced by those living with EDS, particularly the hypermobile variant (hEDS), which affects the connective tissues supporting the skin, bones, and organs.
Imogene’s Struggle for Diagnosis
After enduring 15 years of chronic pain and spending over £20,000 on medical consultations, Imogene finally received her diagnosis in 2022.
Initially misdiagnosed with chronic fatigue syndrome, her symptoms escalated to include fainting, seizures, and mobility issues. Despite her debilitating condition, she was often dismissed by medical professionals, with one neurologist labeling her as “hysterical.” This lack of understanding and support left Imogene feeling isolated and questioning her sanity.
The Impact of Ehlers Danlos on Daily Life
Living with hEDS significantly impacted Imogene’s quality of life. For seven years, she was unable to work or travel independently, which took a toll on her mental health. The diagnosis brought relief but also highlighted the challenges of managing a genetic condition that is not widely recognized in the medical community. Imogene’s journey underscores the importance of awareness and education regarding EDS, as many individuals remain undiagnosed or misdiagnosed.
Finding Strength Through Activity
Determined to avoid a £50,000 surgery, Imogene turned to exercise as a means to stabilize her neck, which was causing her neurological symptoms. She emphasizes the importance of staying active for those with EDS, stating, “If you have Ehlers Danlos, the best thing you can do is stay active.” Her commitment to physical activity has transformed her life, allowing her to return to her passion for climbing and hiking. Imogene’s story serves as an inspiration for others facing similar challenges, demonstrating that resilience and determination can lead to recovery and empowerment.
Raising Awareness and Funds for Ehlers Danlos Society
In an effort to raise awareness about EDS, Imogene is embarking on an ambitious trek across the Isle of Skye, aiming to conquer the 22 summits of the Cuillin Ridge Traverse. Joined by a support team and fellow climbers, she hopes to shed light on the condition and raise funds for the Ehlers Danlos Society. The expedition will be documented for the Dundee Mountain Film Festival, further amplifying her message. Imogene’s journey is not just about personal triumph; it is a call to action for better recognition and understanding of Ehlers Danlos Syndrome.
