Issues With My Tissues (Feature length Documentary)

Lara Bloom

30 Jan 201862:48

EducationalLearning

32 Likes 10 Comments

TLDRLara, a woman living with Ehlers-Danlos Syndrome (EDS), a complex genetic disorder affecting connective tissues, embarks on an ambitious journey to become the first person with EDS to complete the London Marathon. Despite the physical challenges and under-diagnosed nature of her condition, Lara is determined to raise awareness and change perceptions. Her training is fraught with pain and setbacks, including dislocations and autonomic dysfunction, yet she remains committed. With the support of her physiotherapy practice and the community, Lara pushes through the physical limits imposed by her condition. Her story is a testament to resilience and the human spirit, highlighting the importance of understanding and supporting those with invisible illnesses. Ultimately, Lara completes the marathon, though not without significant physical代价, and encourages others with chronic conditions to challenge themselves safely.

Takeaways

🌟 Lara, who has Ehlers-Danlos Syndrome (EDS), aims to be the first person with the condition to complete the London Marathon, raising awareness about EDS and its complexities.
🏥 EDS is a genetic connective tissue disorder with six known types, often underdiagnosed due to its wide spectrum of symptoms and the lack of medical education on the condition.
🤝 Lara's journey is supported by her physiotherapy practice, which donates treatment and helps her build strength and fitness to manage hypermobility and prepare for the marathon.
💪 Despite the physical challenges, Lara is determined to complete the marathon, using her high pain threshold and positive attitude to push through the training and the event itself.
🚑 There are significant health risks associated with EDS, particularly for the vascular type, which can be life-threatening due to complications like aneurysms and organ failure.
🏃‍♀️ Training for the marathon is extremely challenging for Lara, with chronic pain and physical limitations, yet she continues to train six days a week.
🤔 The medical community's understanding of EDS is limited, and Lara's family and friends express concern about the potential consequences of her participating in the marathon.
🏆 Lara's mother creates a personalized medal for her, symbolizing the personal victory of raising awareness for EDS, regardless of the marathon's outcome.
🎥 The documentary serves to inspire those with chronic conditions to push their boundaries, while also highlighting the importance of understanding one's limits to prevent further harm.
📈 Lara's preparation includes a cardiac ultrasound to monitor her heart's structure and function, given the potential risks associated with EDS and physical exertion.
🏁 Completing the marathon is a personal triumph for Lara, but it also highlights the physical toll it takes, leading to a stress fracture and a longer recovery period.

Q & A

What is Ehlers-Danlos Syndrome (EDS)?
-Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissues, including the skin, ligaments, and joints. It is characterized by hypermobility, skin that is easily bruised and hyper-elastic, and chronic pain.
Why is EDS often under-diagnosed?
-EDS is often under-diagnosed because its symptoms can be complex and confusing, with a wide spectrum of severity. Additionally, there is a lack of awareness and education about the condition among medical professionals.
What is Lara's goal in relation to the London Marathon?
-Lara aims to become the first person with Ehlers-Danlos Syndrome to complete the London Marathon. She uses this challenge to raise awareness about EDS and to show that people with the condition can push their boundaries.
What are the potential complications of EDS for Lara during her training and the marathon?
-Lara faces potential complications such as joint dislocations, chronic pain, and autonomic dysfunction. There is also a risk of the mitral valve failing due to the weakened collagen in her connective tissues.
What is the vascular type of EDS?
-The vascular type of EDS is a more severe and life-limiting form of the condition. It is characterized by a higher risk of arterial and intestinal ruptures, which can lead to life-threatening complications.
What is the impact of EDS on a person's daily life?
-EDS can significantly impact a person's daily life, causing chronic pain, joint instability, and a reduced quality of life. It can lead to physical limitations, the need for medical interventions, and emotional challenges such as frustration and depression.
How does Lara's condition affect her physically during her training for the marathon?
-Lara experiences severe pain in her legs, hips, and shoulders during her training. She also deals with issues like joint dislocations and a high pain threshold, which can mask the severity of her physical condition.
What role does physiotherapy play in managing EDS?
-Physiotherapy plays a key role in managing EDS by improving posture, proprioception, body awareness, and muscular strength. It also helps with pain management and cardiovascular fitness, which can significantly improve the quality of life for individuals with hypermobility and EDS.
What is the significance of Lara's attempt to complete the marathon?
-Lara's attempt to complete the marathon is significant as it serves as a testament to her resilience and determination. It also raises awareness about EDS, challenges misconceptions about the condition, and inspires others living with chronic illnesses.
What are the long-term effects of Lara's decision to complete the marathon despite her condition?
-The long-term effects include a prolonged recovery period for Lara's legs, a stress fracture that required a six-week cast, and potential exacerbation of her chronic pain. However, she also gains a sense of accomplishment and the opportunity to inspire others.
What message does Lara hope to convey to others with chronic conditions through her documentary?
-Lara hopes to inspire those with EDS or any chronic condition to understand that they can have good days and should not be afraid to push their boundaries. She encourages them to create their own challenges and make the most of their abilities without overexerting themselves to the point of severe harm.

Outlines

00:00

🏃‍♀️ Lara's Marathon Challenge with EDS

Lara, a person with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder, plans to walk the London Marathon. She aims to raise awareness about the condition, which is often under-diagnosed. Despite the physical challenges and pain, Lara is determined to complete the marathon, showcasing the wide spectrum of symptoms and capabilities among EDS patients.

05:00

💔 The Impact of Vascular EDS

The script shares stories of individuals with the vascular type of EDS, which is life-limiting and can lead to sudden death due to aneurysms. It recounts the tragic loss of Joanna Court and the Strudwick family, emphasizing the heartbreak and the reality of living with the constant threat of the condition.

10:03

🏥 Medical Support for Lara's Marathon

Lara receives medical and physiotherapy support for her marathon training. The focus is on improving her posture, proprioception, body awareness, and building muscle strength and cardiovascular fitness. Despite the risks, including potential heart valve issues, Lara is committed to her goal, and her healthcare team is dedicated to helping her prepare.

15:05

🤸‍♀️ Training Challenges and Pain Management

Lara's training for the marathon is fraught with physical challenges, including severe pain and muscle weakness. The narrative describes her struggle to build muscle and the difficulty of managing chronic pain. It also touches on the emotional toll of the condition and the risk of self-harm and suicidal thoughts among patients.

20:09

🔍 The Complexity of EDS and Its Diagnosis

The script discusses the complexities of diagnosing EDS, particularly the high permeability type, which is often confused with other conditions like irritable bowel syndrome (IBS). It highlights the need for greater medical awareness and the importance of recognizing the signs of autonomic dysfunction.

25:10

👣 The Marathon Journey and Its Aftermath

Lara completes the London Marathon, an achievement that, despite the physical toll and a subsequent stress fracture, represents the best day of her life. The narrative reflects on the balance between pushing boundaries and the risks of exacerbating her condition, encouraging others with chronic conditions to seek their own challenges and celebrate their achievements.

Mindmap

Keywords

💡Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders that affect the connective tissues, including the skin, ligaments, and joints. It is characterized by hypermobility, skin that is easily bruised and hyper-elastic, and joint instability. In the video, Lara, who has EDS, is attempting to walk the London Marathon, highlighting the challenges and resilience associated with the condition.

💡Hypermobility

Hypermobility refers to joints that move beyond the normal range of motion. It is a common feature in people with EDS and can lead to joint instability and chronic pain. The video discusses the impact of hypermobility on Lara's training for the marathon and her daily life.

💡Connective Tissue

Connective tissue is a complex network of proteins that provide structural support to various parts of the body, including the skin, bones, and blood vessels. In EDS, the connective tissue is affected, leading to the symptoms experienced by those with the condition. The video explains how the genetic defects in EDS weaken the connective tissue matrix proteins.

💡Chronic Pain

Chronic pain is persistent pain that lasts beyond the usual recovery period of an injury or remains even after healing has occurred. In the context of the video, Lara and others with EDS experience chronic pain due to the condition's impact on the body's connective tissues and joints.

💡London Marathon

The London Marathon is a long-distance race held annually in London, UK. It is one of the largest and most famous marathons in the world. In the video, Lara aims to become the first person with EDS to complete the London Marathon, symbolizing a personal and collective challenge.

💡Under-diagnosed

Under-diagnosed refers to a condition that is not recognized or identified as often as it actually occurs. EDS is described as not rare but massively under-diagnosed in the video, which contributes to the lack of awareness and understanding about the syndrome.

💡

💡Vascular Type EDS

Vascular Type EDS is a life-limiting form of the condition that affects the blood vessels and organs. It is characterized by a higher risk of arterial and intestinal ruptures. The video shares stories of individuals who have lost their lives to this type of EDS, emphasizing its severity.

💡Gastrointestinal Issues

Gastrointestinal issues refer to health problems related to the digestive system, which includes the gastrointestinal tract from the mouth to the anus. In the context of EDS, these issues can arise due to the involvement of collagen in the peristaltic movements of the digestive process. Lara's experience with feeding tubes and TPN (total parenteral nutrition) is mentioned in the video as a consequence of her gastrointestinal problems.

💡Autonomic Dysfunction

Autonomic dysfunction refers to a malfunction of the autonomic nervous system, which controls involuntary bodily functions such as heart rate, blood pressure, and digestion. In the video, it is mentioned that individuals with EDS can experience dizziness, fainting, and other symptoms due to autonomic dysfunction.

💡Pain Amplification

Pain amplification is a phenomenon where the experience of pain is intensified, potentially due to changes in the way the brain processes pain signals. The video discusses how people with EDS, like Lara, can experience pain amplification, leading to a significant increase in their daily discomfort.

💡Stress Fracture

A stress fracture is a small crack or break in a bone caused by repeated stress over time, often from physical activity. In the video, Lara discovers she had a stress fracture during her marathon attempt, which she walked on for 13 miles, highlighting the extent of her determination and the physical toll of her challenge.

Highlights

Lara is attempting to be the first person with Ehlers-Danlos syndrome (EDS) to walk the London Marathon.

EDS is a complex genetic connective tissue condition that is often under-diagnosed.

Lara's diagnosis at age 11 provided relief and understanding for her physical symptoms.

EDS affects people on a spectrum, ranging from mild to severely debilitating symptoms.

The condition involves a genetic defect that weakens connective tissue matrix proteins, impacting strength and resilience.

Lara experiences life-altering symptoms, including severe pain and gastrointestinal issues.

Lara's marathon is in memory of Joanna Court, who died from the vascular type of EDS at 19.

The documentary aims to raise awareness about the invisible nature of Lara's illness and its internal impact.

Lara's training for the marathon is crucial for managing hypermobility and EDS symptoms.

Despite the risks, including potential heart complications, Lara is determined to complete the marathon.

Lara's physiotherapy plays a key role in improving her posture, proprioception, and cardiovascular fitness.

The marathon training is taking a physical toll on Lara, causing significant pain and discomfort.

Lara's mother discusses the challenges of seeking a diagnosis and the emotional impact on the family.

The documentary highlights the importance of recognizing and treating chronic pain associated with EDS.

Lara's journey showcases her determination and the support from her physiotherapy practice and sponsors.

The marathon serves as a platform for Lara to raise awareness and funds for EDS UK and related research.

Lara's story emphasizes the need for increased medical knowledge and understanding of EDS.

Despite completing the marathon, Lara suffered a stress fracture and the experience highlighted the physical risks of her condition.

The documentary concludes with a message of hope and encouragement for others with chronic conditions to push their boundaries.

Transcripts

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Related Tags

Ehlers-Danlos Syndrome London Marathon Awareness Chronic Pain Physical Challenge Genetic Disorder Perseverance Health Advocacy Inspirational Story Medical Condition Community Support