Through the Eyes of a Friend

This is a heartfelt and honest description of my experiences of living with EDS through the eyes of my amazing friend Bethany. It is not intended to be a medical resource. EDS affects each of us differently. This piece describes a snapshot into my life and each day is different. I have good patches and bad with my gastric failure. Most EDS sufferers do not have the severity of complications that I have. If anyone has any concerns about EDS, please check out Ehlers Danlos Support UK (https://www.ehlers-danlos.org/, freephone helpline 0800 907 8518).

  

Through the Eyes of a Friend: What EDS is Doing to Sarah Gearing and Others

Edited from an original article by Bethany Heard-Hubbard

My wonderful friend Sarah has been the focus of a fundraising campaign these past six weeks to raise £130,000 for her life-saving surgeries. We hope as we have raised awareness of #SurvivalSurgery4Sarah it has also helped to raise awareness of an Ehlers-Danlos Syndrome sufferer’s plight in general. EDS is still one of those genetic illnesses/disabilities that the general public have hardly heard of, if at all.

EDS has many incumbent problems and complications, and Sarah’s form has many particular issues of its own. EDS can occur either through an extremely rare genetic mutation, or an equally rare case of hereditary bad luck. At the beginning of studies on the subject it was thought that the chances of getting EDS were akin to the chances of winning the lottery. However, in more recent times, the reality is being uncovered; it is more common than once thought, but is very often misdiagnosed.

EDS affects the collagen in the body, affecting the connective tissues and therefore many of the body’s vital systems. A typical symptom in most EDS sufferers is hypermobility and double-jointedness, which over time leads to frequent dislocations throughout the body. Sarah herself also suffers with paralysis of the digestive system, which can leave her in a lot of pain after eating, as her digestive system struggles to digest her food. She has to take a truly awful medical concoction, which tastes like vomit and has in it the digestive enzymes her body now lacks, to be able to digest what little food she has been able to eat. She has gone for many periods living on sips of water and a few mouthfuls of rice pudding, and has more recently had to depend on specialist nutrition drinks, which is for now keeping at bay the need for a permanent feeding tube which would leave her unable to enjoy the experience of eating, which most of us enjoy and take for granted.

Sarah has good days and bad days; episodes of hardly being able to eat, interspersed with more normal periods of eating just well enough. From a friend’s point of view, I note that, even when Sarah manages to eat reasonably, she is very noticeably underweight. When she is going through a bad patch she will experience extreme pain typically a couple of hours after eating.

Sarah deals with many other EDS-related symptoms, like her rapidly deteriorating eyesight, her widespread nerve damage, and her autonomic system related seizures. She has a live-in carer to look after her but the hero in Sarah’s life is Otto, known as Otty, her fully trained Assistance Dog from the wonderful charity Dogs for Good. Otto’s original training made him very reliable, kind and eager to please, and fortunately he has shown a natural aptitude for detecting Sarah’s seizures. As such, he is as much a Seizure Alert Dog now; he has more than once saved Sarah’s life by alerting her and her carers early enough to oncoming aggressive seizures. These seizures, when they happen, have many effects on Sarah, including temporary confusion/disorientation.

Myself and many other friends have rallied to fundraise for Sarah these past few weeks to enable her to receive the life-saving surgery she needs in Spain, booked for 9 November as without it there is a very real likelihood that Sarah might not make it to Christmas. Her most pressing problem is that due to the collagen problems the support structures around Sarah’s brain stem and spinal cord are dislocating/disconnecting, resulting in what is known as CCI (Craniocervical Instability). The net result is that Sarah’s brain is starting to slip and is herniating (pushing through a gap at the base of her skull). On one terrifying occasion recently Sarah’s boyfriend David literally held her life in his hands as Sarah’s skull had dislocating from her spine following a seizure and he had to keep her head still to prevent her death or paralysis.

Surgical fusion of the affected vertebrae and the resulting re-alignment will stabilise Sarah’s skull and spine and enable her to continue living. The surgery will not magically cure her of all her EDS problems, and it will not, literally, put her back on her feet – BUT, it will SAVE Sarah’s LIFE. She will still have health problems and be disabled but it will give her a longevity and quality of life that she would otherwise not have.

Sarah has plans, and so much more to give to life and the people around her. Sarah is an amazing person; blessed with so much enthusiasm and energy to make sure she doesn’t waste a single day where she could be doing something interesting, entertaining, adventurous, or something helpful for another. She wants to live a fulfilling, enriched life, but her body is betraying her. She’s a devout and non-judgemental Christian, and she truly believes that all of us here on this planet have a duty to help one another. I have never before met a person as good, true, compassionate, realistic, generous, determined and thoroughly decent as Sarah Gearing. After her surgery and post-operative recovery (for which we are still fundraising) she is determined to make a strong recovery and throw her energies into being an encouragement and support to and an advocate for other EDS sufferers.

Please, help to SAVE THE LIFE of my friend, Sarah Gearing! Share the links telling her story; sponsor a fundraiser; donate some money directly to her surgery fund. Please – the world will be a poorer place without her.