4 Must-See Documentaries on EDS/HSD

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Aug 23, 2023 | MeekaC | @meekaclayton

Documentaries are powerful tools for raising awareness and fostering empathy for chronic illnesses. In this blog post, we've put together a summary of 4 different documentaries about Ehlers-Danlos Syndrome. If you haven't watched these documentaries before, you might be wondering, “should I read on?” Don't worry! We've made sure to keep things exciting without giving away any spoilers. So, you can enjoy discovering these remarkable stories at your own pace.

1.  We are visible.                                                                                     

The central theme of this documentary was making Ehlers-Danlos syndromes more visible by increased awareness. The documentary begins with Karina Sturm's story, the driving force behind the project. It then takes the audience on a journey to different parts of the world, featuring seven patients of all ages, ranging from 5 to 60, along with their families. Throughout this emotional journey, viewers witness the challenges, achievements, and daily lives of these individuals, gaining valuable insights into their perspectives on the world.

1. Bend or Break

This documentary tells the story of Mitch Martow, who faced the challenges of living with Ehlers-Danlos syndrome. It follows his journey from the struggles he encountered during his school days and daily life to the difficulties within his family before receiving a diagnosis. The film beautifully portrays how with the unwavering support of his family he managed to overcome these obstacles, even after a dark period in which he contemplated suicide. Moreover, the film highlights the significance of early diagnosis and understanding the disorder from the patient's perspective. It underscores the vital role played by supportive families in a patient's recovery, especially when faced with disbelief from others.

1. Issues With My Tissues

This inspiring documentary follows Lara Bloom's extraordinary journey as the first person with EDS to walk the London Marathon. From overcoming initial struggles of walking three miles to rigorous training and ultimately accomplishing the marathon, the film offers an exciting and intimate look into her transformation. You can witness her training sessions, doctor appointments, and experience the emotional highs and lows of marathon days. We highly recommend watching until the end to gain insight into her thoughts, feelings, and the impact of completing the marathon.

1.  Trust Me I Am Sick

This compelling documentary follows the lives of five Los Angeles residents, each battling different chronic conditions like HIV, lupus, diabetes, Ehlers-Danlos syndrome, and kidney disease. The documentary comprises five unique episodes, exploring themes such as their loved ones' reactions to chronic illness, pursuing dreams amidst health struggles, self-identity beyond illness, and the unseen challenges of living with chronic conditions. In this documentary, you can find how people are affected, not just by Ehlers Danlos, but also by other chronic conditions.

To summarize, these documents share a common position - that many people are unaware of the existence of Ehlers-Danlos syndromes. Unfortunately, outsiders might find it difficult to understand the conditions of EDS/HSD patients as they often appear normal from the outside. Spreading awareness through these documentaries can significantly reduce these problems. So, after watching, please remember to share your impressions with others.

We would love to hear your thoughts on these documentaries and welcome any film suggestions related to EDS. Enjoy watching!

Author: Ozan Soyer,MD