Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am incredibly honoured to share Shannon's story as part of our project. Shannon came across our project on TikTok and reached out to me, asking if she could complete our questionnaire and share her experience with Ehlers-Danlos syndrome and its various co-morbidities.
As someone who also struggles with the same conditions as Shannon and is of a similar age, I found her story incredibly relatable, and I could identify with many parts of her journey. However, I can hardly imagine carrying the weight of these diagnoses while also being a mother. I was particularly moved by Shannon's willingness to share how her chronic illnesses have impacted her experience of motherhood; in her answers, she articulated this in a painfully beautiful way. I am genuinely grateful for Shannon's vulnerability and honesty. I can only imagine how difficult it must be to come to terms with, let alone share, such personal experiences on a public platform.
I hope that Shannon's story resonates with you, and if you are a parent going through something similar, it reminds you that you are not alone." - Ellie Howe, creator and author of 'A Note of Hope.'
“Hi, I’m Shannon. I’m from Calderdale, UK, and I’m 24 years old. I live with several chronic health conditions.”
Between February 2020 and March 2024, Shannon received a series of daunting diagnoses, each of which brings its own set of unique challenges to her physical and emotional well-being.
Amidst all of her health conditions, however, Shannon's medical journey has been defined by a central diagnosis of Ehlers-Danlos Syndrome (EDS).
According to The Ehlers-Danlos Society UK, the Ehlers-Danlos Syndromes (EDS) are a group of thirteen heritable disorders that result from genetic mutations that specifically impact the structure and function of connective tissue. Connective tissues play a critical role in the body, providing structural support and protection to organs and tissues from physical damage and pathogens. They also perform various other functions, including contributing to the body's repair and healing processes, such as wound healing and tissue regeneration. The Ehlers-Danlos Syndromes affect the body's ability to produce collagen, a protein that provides strength and elasticity to the skin, organs, and bones. Consequently, certain hallmark features are shared among all EDS subtypes, including joint hypermobility, skin hyper-extensibility, and tissue fragility that predisposes them to joint subluxations, dislocations, and related injuries.
It is important to note that each subtype of EDS has a unique prevalence within the population. Shannon has been diagnosed with the Hypermobile Ehlers-Danlos Syndrome subtype, which is the most common form of subtype of EDS, accounting for nearly 90% of all diagnosed cases. Unfortunately, despite its increasing prevalence within our society, there is currently no cure or disease-specific treatments for this condition. Management of the condition involves addressing each individual's symptoms, and physical therapy, braces, and assistive devices can help manage mobility symptoms and reduce the risk of joint dislocations.
Shannon hopes to raise awareness about the debilitating impact of Ehlers-Danlos Syndrome and its many comorbidities by sharing her story with A Note of Hope.
To find out more about Ehlers-Danlos Syndromes, click the link below:
Ehlers-Danlos Syndromes
Ehlers-Danlos syndromes are a group of conditions that cause very flexible joints and stretchy and fragile skin.
Ehlers-Danlos Syndrome (EDS) is a condition that affects multiple organ systems and has a widespread impact on the body. Due to the overlapping nature of these factors, people with EDS can experience a complex range of co-morbidities.
For example, Shannon has also been diagnosed with Mast Cell Activation Syndrome (MCAS), a rare and complex condition that affects the normal functioning of mast cells in the body. Mast cells are an essential part of the immune system and help to protect the body from foreign invaders like bacteria and viruses. In MCAS, however, these cells overreact to triggers that would not usually cause a reaction. Even something as simple as a change in temperature, exposure to certain foods, or emotional stress can trigger a reaction. The symptoms of MCAS are diverse and often unpredictable. They can include skin rashes, itching, flushing, abdominal pain, diarrhoea, nausea, vomiting, lightheadedness, and, in the most serious cases, anaphylaxis.
Another of Shannon's diagnoses' is Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a condition that affects the autonomic nervous system and causes orthostatic intolerance, which means that patients can experience dizziness, lightheadedness, and fainting whenever they stand up. Additionally, this condition causes the body to struggle to maintain sufficient blood flow to vital organs like the brain, heart, and lungs, causing her to feel fatigued and out of breath, meaning daily activities like getting out of bed, showering, or walking upstairs, can easily trigger symptoms.
Patients with hypermobile Ehlers-Danlos syndrome (EDS), like Shannon, often have conditions such as Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) alongside EDS. These co-morbidities may be caused by shared underlying mechanisms or genetic predispositions. For instance, the autonomic nervous system regulates the body's "automatic" functions, including heart rate, blood pressure, and digestion. However, in individuals with EDS, the autonomic nervous system may not function properly, leading to symptoms such as fainting, dizziness, and gastrointestinal issues - all of which align with a diagnosis of POTS. Moreover, the dysfunction in connective tissue caused by EDS can also affect Mast Cell stability, contributing to conditions like MCAS.
Furthermore, Shannon's health struggles are further complicated by hypoparathyroidism, a condition characterised by the insufficient production of parathyroid hormone. This hormone is essential for regulating calcium levels in the body, and its deficiency can cause many problems, such as muscle cramps, spasms, and weakness, as well as neurological disturbances like seizures and tremors. Additionally, Shannon has also been diagnosed with Chronic Migraines, which is a neurological disorder that causes severe headaches, usually on one side of the head, and can last for hours or even days, as well as Endometriosis. This chronic and painful menstrual condition causes heavy menstrual bleeding and severe abdominal and pelvic pain.
In addition to her other health concerns, she has been diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) and Post-Traumatic Stress Disorder (PTSD). This means that Shannon may experience symptoms such as difficulty concentrating, impulsive behaviour, hyperactivity, anxiety, flashbacks, and nightmares.
Collectively, these conditions create a complex set of challenges that significantly impact Shannon's quality of life. Coping with any one of these conditions can be overwhelming, but dealing with the consequences of each diagnosis is an unbearable burden.
To find out more about Shannon's additional diagnoses, click the link below:
Mast Cell Activation Syndrome (MCAS)
Postural Orthostatic Tachycardia Syndrome (POTS)
Hypoparathyroidism
Chronic Migraines
Endometriosis
Shannon's greatest struggle, however, is in accepting the limitations that her health issues impose on her role as a mother to her 5-year-old daughter. Shannon loves her daughter deeply, but the symptoms of her medical conditions often make it hard for her to keep up with the demands of raising a child.
Shannon is facing a heartbreaking reality - one that I'm sure many parents living with chronic illnesses can relate to. Despite her profound desire to care for her daughter independently, she is slowly coming to terms with the fact that she may not be able to do so. Her health struggles have made it increasingly challenging for her to provide the level of care that her daughter needs. As a result of her struggles, Shannon is starting to acknowledge that she needs additional support and assistance. She knows she may need to rely on others to help her care for her daughter, and this is a fact that she is slowly starting to accept.
Despite these difficulties, Shannon remains determined to provide her daughter with the best possible life while navigating the complexities of her conditions. Currently, she is a distance learning student pursuing an undergraduate degree in psychology with counselling. In addition to her studies, Shannon also runs a small business through TikTok, where she sells a range of homeware, accessories, and cleaning products.
The challenging prognosis of her Ehlers-Danlos syndrome diagnosis and its numerous co-morbidities weigh heavily on Shannon’s mind. However, she remains determined not to let her health define her life. Instead, she is committed to living a life of hope despite her limitations. Shannon shares how difficult it has been to balance her health while returning to the world of studying. However, when all seems impossible, Shannon's daughter serves as a source of inspiration and encouragement to keep going.
“It's been hard to accept that I won't be able to care for my daughter alone or have another child because of my health challenges. It’s heartbreaking to live separately. Going back to study has also been a challenge, it's hard to stay motivated. But I know I’m doing my best, especially with my EDS!”
Shannon lives by the motto, "Someone to love, something to do, something to look forward to". She firmly believes that a resilient life can be achieved by finding joy in simple pleasures rather than focusing on what we cannot or do not have.
Recognising the importance of self-care, Shannon honours her body's need for rest. Shannon has found solace and comfort in journaling as part of her self-care routine. She has discovered that journaling is therapeutic and a creative outlet that allows her to express her thoughts and emotions without fear of judgment or criticism. In her journal, she can explore her feelings, reflect on her experiences, and gain insight into her innermost self.
In addition to journaling, Shannon practices meditation to cultivate inner peace. She finds that meditation helps her anchor herself, allowing her to navigate challenges with greater ease and grace. Through the practice of meditation, Shannon has learned to find refuge in the stillness of the present moment, letting go of worries about the past and future and focusing on what is happening in the here and now.
Overall, Shannon's commitment to self-care through journaling and meditation has helped her to build resilience, gain insight, and cultivate inner peace. These practices have become an essential part of her chronic illness journey.
“The key to living with chronic illness is always having something to do. It is also so important to prioritise rest. Never be ashamed to ask for help and support when you need it.”
Shannon also finds that having a goal to work towards is especially helpful when her health feels challenging. Shannon loves travelling and finds that planning and booking a trip gives her a sense of purpose. Despite the challenges posed by her chronic condition, Shannon is determined to continue living her life with passion and purpose, and travelling is an integral part of that.
If Shannon could go back in time, she would offer a simple yet powerful message of encouragement to her past self: 'Never give up; you are stronger than you think.' This message serves as a reminder that even in the darkest moments, there is always light, and within all of us is the strength to overcome any obstacle.
Thank you Shannon for sharing your inspiring story for the 'A Note of Hope' project.
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