Jenny Rowbory was born in 1986 in Ashford, Middlesex, and currently lives in Wales. She is a published poet (‘Rainbows in my eyes’, Longman, 2009). During her first year at university in 2004, she became ill with a virus that caused severe Myalgic Encephalomyelitis (inflammation of the brain and spinal cord), causing Jenny to become bed-bound and acutely ill for the last seventeen years.
In May 2015, after genetic testing, Jenny was also diagnosed with Ehlers-Danlos Syndrome. This genetic disorder causes the body to produce faulty collagen. The biggest problem for Jenny is that the faulty collagen causes the ligaments and connective tissue in her neck to be lax, which means that it can’t support the skull. So the vertebrae and skull move around and subluxate (subluxation is like dislocation) and blood flow is severely reduced, causing increasing numbness.
This neck instability became life-threatening and Jenny had to have an operation in January 2020 to try to fuse her neck in place to save her life, as well as a decompression surgery for Chiari Malformation. Unfortunately the fusion surgery was not a success and Jenny became a lot more disabled and it’s too dangerous for her to move her neck or head at all. The only neurosurgeon in the world who specialises in fusion (and fusion revision) surgeries and invasive bolt traction testing to determine the correct fusion position for highly complex Ehlers-Danlos Syndrome patients, is in the USA. Jenny is clinging to life by the skin of her teeth and has been trying to hang on for over a year while trying to fundraise enough money for the three surgeries that this neurosurgeon has said Jenny needs to have a hope of staying alive and regaining some sort of quality of life.
Jenny’s next big fundraising push is the release of a book of her collected poems, called We Are The Winter People. It is being released on 8th September 2021 in paperback, ebook and audiobook format. The money raised by the sales of this book will go directly towards this goal of getting Jenny to America to have the life-saving surgeries she desperately needs, which aren’t available to her in the UK.
If you would like to donate further, you can do so through her fundraising page, which is GoFundMe.com/SaveJenny. Jenny would very much like to stay alive and is very grateful for any donation you’re able to give.
Jenny hasn’t been able to move her head off her pillow since the unsuccessful fusion surgery. She can’t look down, up or side to side. She can’t be washed or have her pyjamas or bedding changed because if she moves her neck even a tiny bit in the wrong direction, she does massive extra damage to her neck and blood flow is reduced further. Any extra bit of damage could very easily kill her. Nurses have tried and failed to wash her or change her clothes without seriously harming her neck further. The subluxing vertebrae have moved the neck into a structure that obstructs her airway quite a lot and she is always in respiratory distress. There is nothing more any doctor in the UK can do for her. So she has been left in this condition until she can raise the money needed to be treated by the surgeon in New York.
Only a patch of ceiling directly above Jenny is within her field of vision. The only part of her body that she’s seen since the operation are her hands, which she can raise to her eyes to see but she can’t look down to see anything else. She’s rarely able to look at the screen of her phone, even though she tries to hold it up directly above her head to put it in her field of vision, because doing so damages her neck more. So she has been completely cut off from the world and from other people. Her only solace has been audiobooks. So the fact that an audiobook will be helping to raise the funds for her surgeries is particularly fitting.
Some blog posts that Jenny has written
- My reading history: https://www.jkrowbory.co.uk/2015/08/what-role-have-books-played-in-my-life/
- My favourite fictional female characters: https://www.jkrowbory.co.uk/2016/07/my-favourite-fictional-female-characters/
- Words that help me: https://www.jkrowbory.co.uk/2016/06/words-that-help-me/
- Confronting my own internalised ableism: https://www.jkrowbory.co.uk/2017/05/combatting-my-own-internalised-ableism/
- The eternal dilemma of trying to Sort myself into a Hogwarts House: https://www.jkrowbory.co.uk/2017/07/hogwartshousesorting/
- Cinema memories: https://www.jkrowbory.co.uk/2017/09/cinema-memories/
- Q & A with Jenny about poetry, faith, suffering, TV and books: https://www.jkrowbory.co.uk/interview-with-jenny/
- The Best 25 Romcoms and How I Came to Love the Genre: https://www.jkrowbory.co.uk/2017/10/romcoms/
- My favourite books: https://www.jkrowbory.co.uk/my-favourite-books/
- My Favourite Things: https://www.jkrowbory.co.uk/2013/11/my-favourite-things/
- Fictional male role models: https://www.jkrowbory.co.uk/2017/07/fictional-male-role-models/
- When it hasn’t been your day, your week, your month or even your 8 years: https://www.jkrowbory.co.uk/2012/12/8-years/
- My buzzfeed listicles: http://www.buzzfeed.com/stroopwaffle
Myalgic Encephalomyelitis is when a virus or enterovirus (or an as-yet-undiscovered retrovirus) causes:
- inflammation of the brain, spinal cord and nerves
- deficiency and dysfunction of the immune system
- failure of the mitochondria (the body’s energy is manufactured in the mitochondria), which leads to muscle failure, and heavy exhaustion
- damage and dysfunction of the heart and cardiovascular system
- dysfunction of the digestive system, including poor absorption
- extreme sensitivity to noise, light and movement
The hallmark of Myalgic Encephalomyelitis is deterioration upon any slight activity/exertion/movement. Gradually trying to increase your activity can cause permanent damage. The severity of the disease varies greatly from person to person, with some having to be tube-fed and bed-bound, whereas others are just about able to manage a part-time job. In some cases it can be fatal.
Dr. Daniel Peterson, a leading M.E. clinician from Sierra Internal Medicine in Nevada, found that “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. The Head of the AIDS and M.E Clinic at Oregon Health Sciences University said that a severe M.E patient “feels effectively the same every day as an AIDS patient feels two weeks before death.”
This is a disease that should no longer be controversial. Professor Anthony Komaroff (of Harvard Medical School) confirms “There are over 4,000 papers on the biomedical nature of ME/CFS…spanning over 60 years.” It beggars belief that some doctors still believe that this is a psychological disorder. But it is not surprising since the psychologists/psychiatrists who have the government’s ear have vested interests in the health insurance industry. The Countess of Mar has slated this corruption recently in The House of Lords: http://www.meassociation.org.uk/content/view/826/161/
Unfortunately this all means that the NHS’s treatment approach is based on the should-be-void psychosomatic model of M.E./CFS. If sufferers want any biomedical treatment, we have to go to a private doctor. Internationally renowned Dr. Jonathan Kerr of St George’s University of London and Dr. Sarah Myhill in Wales are at the forefront of M.E. research and treatment in this country. They have discovered that CFS is “heart failure secondary to mitochondrial malfunction”: http://home.att.net/~potsweb/atp.html
Dr Sarah Myhill has published a paper which details ‘A Test for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)’ which she is now using to diagnose patients. The NHS and NICE however are unlikely to even acknowledge this, such is the ignorance and corruption surrounding this illness. http://www.prohealth.com/me-cfs/library/showArticle.cfm?libid=14274&B2=EM021109C
Not only do we have to cope with a serious illness, we have to cope with disbelief from doctors, friends and family. NHS doctors in their ignorance prescribe GET (Graded Exercise Therapy) which has proved to be harmful for most M.E. patients and has caused many to get irreversibly worse. Professor Malcolm Hooper and Margaret Williams wrote:
In relation to the potential dangers of exercise for people with ME/CFS, there is evidence that in some ME/CFS patients, their antioxidant defences against free radicals (which can cause damage to the cells of the body) are overwhelmed, resulting in cell injury, a process known as oxidative stress. Exercising muscle results in excessive free radical generation, and research has demonstrated that incremental exercise challenge induces a prolonged oxidative stress in ME/CFS patients, who are known to carry a heavy load of oxidative stress.
There is real concern that not only is CBT (Cognitive Behavioural Therapy, the other “treatment” provided by the NHS) ineffective, but that GET is potentially harmful to patients with ME/CFS. It is known that GET may leave up to 82% of ME/CFS patients who have undertaken it irreversibly house or bed-bound. Given what is known about the disease, this is hardly surprising.
About Vascular Ehlers-Danlos Syndrome
People with Vascular Ehlers-Danlos Syndrome (vEDS) have a mutation of the gene COL3A1. This mutation alters the structure, production and processing of a protein in our bodies called collagen. A huge amount of our bodies are made up of collagen; it provides structure and holds our bodies together. This is why having faulty collagen is such a big problem and why my body is falling apart in so many ways. It is multi-systemic and as you get older, the condition deteriorates. This is why it is getting increasingly difficult for me to breathe and swallow.
The vascular type of Ehlers-Danlos Syndrome, which is what I have, is life-threatening and the majority of people with vEDS don’t live beyond their forties. This is because the blood vessels and hollow organs in a person with vEDS are fragile and prone to spontaneous rupture, due to the defective and weakened collagen. This is why I have had such a problem with uterine haemorrhages.
It is important that paramedics and doctors be educated about vEDS so that in an event of a rupture, patients be dealt with correctly and quickly, which is key to our survival. For example, aortic dissection is pretty common among vEDS patients but it can easily be mistaken for a heart attack so it’s essential that awareness amongst the medical profession be raised.
I wasn’t diagnosed with vEDS until May 2015 so I’m still getting my head around it.