My daughter is doing a charity Event.
If you could spare a bob or 2,
That would be Amazing 👏 🤩
Sponsored zip line
On the 14th June 2026, my dad and I are doing the Velocity Zip-line in Wales and hope to raise awareness for Functional Neurological Disorder (FND) and Ehlers-Danlos Syndromes (EDS). Both of these conditions have had an impact on my family and I would like there to be more awareness surrounding them. If you would like to, and are able to, sponsor us then I have set up a go fund me (the link is attached below) or cash donations can be taken at Innovations Hair Studio. Any money raised will be split equally between FNDAction and EDS UK.
gofund.me/00879b387
About Velocity
Velocity is the worlds fastest zip line - reaching speeds exceeding 100mph - and is around 1 mile long at a height of 500 feet above the Quarry’s Blue Lake.
FND
FND (previously known as conversion disorder) is a neurological disorder that is caused my miss-communications within the brain. As a result, the body does not respond or send signals correctly. However, it is often misdiagnosed due to being misunderstood, under researched and having no diagnostic testing. Instead, a diagnosis is made as a result of other diagnosis’s being ruled out. This is because it is “a software issue, not a hardware issue”, meaning that there is no organic cause and so test results are often perfectly fine. This creates the stigma of symptoms being “all in your head”, but this is not the case. Symptoms can be debilitating and can affect a persons ability to live a “normal” life. Previously, it used to be viewed as being a purely psychological disorder due to often stemming from psychological trauma, however it is now being recognised as being much more than that and can stem from physical trauma (such as surgery, infections, or recurrent illnesses); neurodiversity (such as Autism Spectrum Disorder); Hypermobility Spectrum Disorder/Hypermobile Ehlers-Danlos Syndrome (especially those who have cervical instability); neurological conditions (such as as Multiple Sclerosis, Parkinson’s or Epilepsy); or may not have an obvious cause/be caused by multiple factors. Currently, it is estimated that 50,000- 100,000 people have FND in the U.K. and females and adults are mainly affected (though children and males can also have FND). Unfortunately, there is little support for those who receive this diagnosis due to there being limited research and resources available as well as there being very few specialist centres and health care professionals for this disorder. Therefore, many are left to struggle with symptoms either not improving or getting worse. Currently, there is not cure for FND and, while some may make a full recovery, the primary aim is to reduce symptoms. As a result, many will say that they “are better” as they are better than they previously were and are able to cope with their symptoms more. Some symptoms include: limb weakness; non-epileptic seizures; sensory symptoms; tremor; cognitive symptoms; speech or swallowing symptoms; drop attacks; dystonia; dizziness (PPPD); gait disorder; facial symptoms; jerks/twitches; bladder symptoms; visual symptoms; and tics. Some cooccurring conditions/symptoms can (but not always) include: dissociation; fatigue; pain; sleep problems; headache; post-concussion syndrome; anxiety/panic; health anxiety/somatic disorder; low mood; complex regional pain syndrome; and IBS, chest and other symptoms.
EDS
EDS is a collective term to describe 13 connective tissue disorders which often cause the body to produce structurally poor collagen. These disorders are often genetic and are generally quite rare and unheard of. However, the most common of these is the Hypermobile type. This differs from Hypermobility Spectrum Disorder due to having additional criteria that must be met (such has family history and skin fragility), though they can be just as debilitating as one another and can both be present alongside associated symptoms and disorders. Both of these conditions can be diagnosed by a GP, yet many do not receive a diagnosis due to doctors being unaware of the disorder or not feeling confident to do so. As a result, many are referred to rheumatology clinics or physiotherapists who often do not have the knowledge to treat hypermobility and rheumatologists have recently stopped taking these referrals. It is estimated that 3.4% of the population have hypermobility and chronic widespread pain and it can take an average of 10 years to receive a diagnosis after an onset of symptoms. Furthermore, this is the only subtype that is not diagnosed by genetic testing. Though much more common than the other types of EDS, there are no specialist clinics or health care professionals so little support is available. Some symptoms of HEDS and HSD include: joint hypermobility; joint pain; clicking joints; unstable joint (dislocations/subluxations); fragile skin (easy bruising, poor wound healing, easy scarring); and stretchy skin. HEDS can also make cooccurring conditions more likely, such as: Chronic Fatigue Syndrome; Mast Cell Activation Syndrome; Hiatus Hernia; Organ Prolapse; Autism; Mental Health Conditions (such as Anxiety, Depression and OCD); Dysautonomia/Autonomic Dysfunction (such as POTs); Thyroid issues; Tinnitus; Cervical Instability; Fainting; Endometriosis; Sleep Apnea; Tendonitis/Bursitis; Migraines; Allergies (often unexpected, unexplained or changing often); Gastroparesis; Celiac Disease; Frozen Shoulder; TMJ; Crohn’s Disease/Colitis; Receding Gums; and many more.
Further information
If you would like to learn more then please refer to the following websites:
⁃ www.fndaction.org.uk
⁃ neurosymptoms.org/en/
⁃ www.ehlers-danlos.or
⁃ ohtwist.com/about-eds/comorbidities
FNDAction charity number: 1169554
EDS UK charity number: 1014641
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