We are raising money for Emily, a kind, intelligent, and lively young woman whose life is being destroyed by a genetic disease. Emily is in constant pain and her body is being progressively damaged. Her hopes and dreams have been overshadowed by a living nightmare and the constant fear of further irreversible harm. We are fundraising to access innovative treatments to manage her condition and give Emily the chance to reclaim her life.
Emily is passionate about writing and film. Having studied English Literature at university, she has since embarked on a journey in integrative psychotherapy, seeking to use the adversity and pain she has endured to help others. She has persevered through immense physical challenges, yet her passion, compassion, and resolve remain unshaken. Determined to transform pain into purpose, Emily continues to pursue her creative and therapeutic passions, with the hope of regaining her life, living it to the fullest, and helping others through her experiences.
On the outside, Emily looks like any ordinary young woman. In reality, she is battling Ehlers-Danlos Syndrome (EDS), a rare condition that threatens her future.
Individuals with EDS have a defect in their collagen, the connective tissue that acts as our internal scaffolding. Because collagen is everywhere in our bodies, EDS can affect the whole body and feel uncontainable. For Emily the disease initially manifested in chronic pain and joint dislocations which required surgery, but has evolved over time. In recent years, Emily’s case has become extreme with the EDS affecting her brain. The collagen in her neck is unable to support her spine, creating such instability that the lower part of her skull is sinking into her spine and compressing her brainstem. Blood flow to and from her brain and other organs is compromised, causing periods of paralysis and creating the risk of stroke. All of this means day-to-day Emily lives with debilitating symptoms such as severe short-term memory loss, inability to think clearly, vision loss, excruciating migraines, and loss of mobility, on top of her existing severe pain. None of these symptoms have responded to medication.
Emily is terrified about her future, and often feels hopeless. Her health has tragically meant she has had to suspend her studies at university. Once someone who won awards for her writing, Emily now struggles to even send an email and has become dependent on care. Even being upright for long is a significant challenge, and she can feel herself getting worse each day. Nevertheless, Emily keeps fighting on, determined not to give up. She hopes with the right treatment, she can achieve her dreams.
TREATMENT:
Sadly, there is no cure for EDS at this time. Current treatments are aimed at managing symptoms. For years now, Emily has tirelessly engaged with a huge range of professionals. Medical care for EDS is very fragmented, with different specialists for each element (e.g. neurologists, neurosurgeons, gastroenterologists, cardiologists). Emily has exhausted what each discipline has to offer. She has been in and out of hospital, with visits becoming more regular. Emily is trying to persevere, but she is simply running out of time as her condition deteroriates.
Emily needs urgent treatment to stabilise her current state, prevent further damage and hopefully to restore functioning so she can get her life back. Sadly, such treatments are rare and accessing them is far from straightforward, creating additional stress. Leading expert Professor Rodney Grahame has stated that “no other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome”. There is a shocking neglect of EDS patients and only a few consultants worldwide who can offer specialist treatment for the most serious aspects of the disease, specifically neurosurgeries and stem cell treatment.
HOPE:
There is hope however as innovative treatments are now available in the United States and in Europe. Emily has now been provisionally accepted for pioneering regenerative stem cell treatment developed in Colorado – PICL. This treatment is the only of its kind worldwide, designed for patients with Emily’s condition. It will hopefully be able to stabilise Emily’s cranio cervical instability, which could save Emily’s life, in more ways than one. She has also been accepted for new treatment of the lower spinal cord in Spain. Emily may need neurosurgery in New York from highly specialised surgeons who have consulted on her case.
PLEASE HELP:
Thankfully there are promising interventions which could change Emily’s fate, but she needs your help to access them before it is too late for her. Unfortunately, all the treatments Emily needs are only available privately at present and they are not funded by insurance out of state or abroad. It is heartbreaking to think that life saving treatment exist but could be out of Emily’s reach. Fundraising for these urgent treatments is now her last hope. She needs to raise vital funds to give her any chance of accessing the care she so desperately needs. Please help Emily by donating as much as you can, and sharing with your networks.
Emily hopes your help will not only enable her to survive and achieve her dreams, but also raise awareness of the plight of EDS sufferers. Emily is determined to do all she can so those who suffer with her condition will no longer have to fight to be diagnosed or struggle to access affordable treatment in their own country, having to travel in poor health away from their friends and families to undergo harrowing treatments afforded only through crowdfunded. Please help her in any way you can. Thank you so much.
