JBOT | Occupational Therapy, Life Experience & Creative Thinking.
Welcome to the JBOT website. Simple, practical advice for managing long-term health conditions.
The information on this website teaches a variety of self-management skills for people living with pain, fatigue and poor mobility. It’s also a place to find support and advice. The blog posts are also suitable for a variety of professionals, providing insight into the lived experience of disability.
The blog can only cover so much and it only represents a fraction of my knowledge as an Occupational Therapist and expert patient.
Many visitors to this site are happy to just read and learn. For those of you looking for more tailored support, I offer a range of services via video chat so you can reach me, as an OT without the hassle of leaving your home. One of the wonderful things about Occupational Therapy is that huge improvements can be made to quality of life with a totally hands-off approach. No poking or prodding, just 30 minute sessions via Microsoft Teams.
Stay in the comfort of your own home with a cup of tea while we discuss self-management strategies, devise flare-up plans and more.
My specialist skill areas include living well with long-term health conditions, work place and lifestyle adjustments, accessibility, travel, adventure and innovative technologies. If you’re looking for an OT with life experience and a creative mind-set then please get in touch.
I am happy to communicate via email, phone, text, social media and Teams or you can simply leave a comment below. Even if you just want to say hello or let me know what you think of the site I’d love to hear from you.
About me
I am an Independent Occupational Therapist & an expert patient with many years experience self-managing complex health conditions.
I began my working life in the sport and Outdoor Adventure industries. After being diagnosed with Hypermobile Ehlers Danlos Syndrome, I returned to study and gained a BSc in Occupational Therapy from the University of Northampton. I was named Changemaker Student of the Year 2016. For helping bring wheelchair basketball to the uni, volunteering with the HMSA and keeping this blog. My Final placement also made me the UK’s first OT to work in the travel and tourism industry. Probably a pioneer in remote placement work too.
I finished my degree in September 2016 after 5 years, thousands of miles of travel, 57 nights in 4 different hospitals, 5 different A&Es (some more than once), 4 ambulance trips, countless hospital and GP appointments, 3 work placements, living in student accommodation, hotels and friends’ houses.
I’ve been self employed working via videochat since qualifying. I still volunteer for the Hypermobility Syndromes Association and I’m on their medical advisory board too.
Regular OT work is mostly 1:1 appointments with clients and their loved ones. I’m a regular guest lecturer, I lead webinars and training sessions both in the UK and abroad. I’ve recently started down the Practice Educator route, you can find out more about that in my Practice Educator Diary
I believe there is a relationship I have Dyscalculia, Dyslexia, Dysgraphia and am also an OT who shares lived experiences.
I wonder whether anyone has considered eds in the autistic population. It might just be a coincidence but so many of my autistic friends and colleagues are bendies and alot of the bendies I know are autistic or have autistic traits.
Lots of theorising in this area. Dr Jessica Eccles is researching neurodivergence and hypermobility disorders I beleive. Lots of links with ADHD too.
Research is catching up 🙂
Confirming links between ASD and/or ADHD and HSD and EDS:
“These findings indicate that GJH and ASD are related in adults.” (Glans et al., 2022).
“A strong association between HSD or hEDS and ADHD or ASD. Therefore, children with HSD or hEDS may need to be routinely screened for neuropsychiatric symptoms.”
(Kindgren, E., Quiñones Perez, A. and Knez, R., 2021).
“These two conditions share considerable phenotypic overlap at various levels. Genetic data indicate similarities at the molecular, cellular, and tissue levels, as illustrated by numerous genetic syndromes with comorbid autism and hypermobility, which we have reviewed within this manuscript. EDS/HSD and autism comorbidity and familial co-occurrence lend further credence to this relationship”
(Casanova et al., 2020)
Personally, I’m diagnosed as Autistic, ADHD, Dyslexic and with HSD.
Reading that it occurred to me to wonder if anyone has ever connected dyslexia or any of the other dys-es to EDs? I’m dysgraphic (the writing version for those who don’t know – I can read fine, but my ability to make letters in the right shape & order gets creative if I’m tired or stressed) & dyscalculic (again for those not familiar, this is the math version – words stay in place for me, numbers do not!).
I’ve never seen anything that says there is a connection… or anything that proves there isn’t. Admittedly, my personal favourite theory is that long ago when the fae types sometimes paired up with humans, some of the DNA mix turned out amazing, and some is amazing in ways that really make you say OW, because since when is any DNA cross going to always go well?
But I don’t think I’m going to get anywhere advancing that as a serious scientific concern 😉
Interestingly my optometrist is a specialist in visual stress and tinted lenses for a variety of conditions like migraines, dyslexia and co. They see LOADS of hypermobility too! We’ve often talked about there being a correlation between the groups of conditions. I have no proof other than lots of people who have both a hypermobility syndrome and a dys* condition. Interesting isn’t it!
Alikina – I like your theory re DNA mixing/genetic manipulation as a potential contributory or causative factor of EDS, it’s very close to my own musings! I believe the evidence for such a possibility is very strong so it does warrant deep consideration and investigation
I also have EDS, my paternal ancestral lineage traces back to being a potential descendant of Niall of the nine hostages (hill of Tara) so also possibly the Tuatha de Danann. I also had hyperdontia (extra row of teeth) as a child as do many ancient elongated skulls, possibly descended from Elohim, Nephilim/Anunnaki genetics, which according to some may be related to or actually the Fae and Tuatha types. I also have marfaniod habbitus features and am very tall…There is talk of Akhenaten of Egypt having EDS/marfanoid traits all over the internet which I find very interesting too.
I plan to write about these possibilities in depth at some point as their is plenty of evidence to consider, I’m far from crazy!
I’m dyscalculic, too, with EDS! I’ve never really thought about a connection, but it’s reasonable. After all, EDS is linked to periventricular heterotopia (a semi-rare malformation of brain tissues that causes seizures and sometimes intellectual disabilities, that is far more common in EDS folks.) If EDS can cause ‘dislocations’ of grey matter, stands to reason that it could prompt more subtle changes in other parts of the brain.
I had to laugh when you said that ‘numbers move,’ because I always tried to explain my Ds and Fs in math, (when I got As and A+ in every other subject) by saying that trying to do math was like writing the equations on a chalkboard, and someone is right at your elbow, erasing each digit as soon as you move to write the next one on the mental chalkboard.
Thank God for cheap and plentiful calculators!
Thanks for the link I’ll definitely take a look! If you’re looking for info it’s worth checking out http://www.hypermobility.org the HMSA is the only Hypermobility charity to carry the Nhs information standard! So all the info they gain out is proven to be accurate xx
have a look at Ring Splints By Zomile on facebook 🙂 sorry it took me so long to get back to you! x