What is Hypermobile EDS?
Hypermobile EDS (hEDS) is 1 of 13 genetic connective tissue disorders also known as Ehlers-Danlos Syndromes (EDS). Collectively EDS mainly affects the skin and joints however, other organs can be affected. E.g gastrointestinal organs (tummy) and Cardiovascular EDS (heart). Click here to view all Ehlers-Danlos Syndromes.
This blog will be focusing on hEDS as this is what I have!
How did you get it?
Identifying hEDS as a genetic condition means that the faulty gene (autosomal dominant) is inherited from 1 parent. (I think dad lol - but Allah Knows Best). Alternatively, a new mutation could occur in the offspring. There is a 50% chance of those with EDS will pass on the gene to each child. (Insha’Allah - if Allah Wills of course).
How/when did it effect you?
First let’s dissect the term “Hypermobile”. "Hyper" - meaning more and "Mobile" - meaning movement; is frequently used to describe the joints ability to move beyond its normal Range Of Movement. (ROM)
A joints end ROM is protected by the joint capsule. Fibrous cartilage such as menisci, intervertebral disks, ligaments and tendons are all connective tissues. (Remember all types of EDS are connective tissues disorders)
Joint Related: (not that kind)
Someone with hEDS will have loose, unstable joints that dislocate easily. For me, my main joint that betrayed me at the sweet age of 11 was my left knee. (other joints too but that knee made its’ debut). I wasn’t diagnosed with hEDS back then: I was referred to child psychologists and pain management at Great Ormond Street Hospital. Strange right.
My entire secondary school years were spent on and off crutches with clicking joints and knee pain. Aged 14/15 I was diagnosed with Joint Hypermobility Syndrome (JHS) of the left knee. I dislocated and broke plenty of bones throughout my school years - especially with being a member of the Army Cadets Force, the school’s football team, county’s basketball team and gymnastics squad. A bit much I admit, but honestly I enjoyed it all.
In this photo, I broke the base of my 5th metatarsal - guess where.
It didn’t really effect me until I was 17. My knee dislocated during a physical training session in army cadets when doing suicides. (if you don’t like running with someone screaming at you to go faster, then the AFC isn’t for you). It involved running and changing directions at a fast pace. I was used to my knee popping out frequently so much so, that I would just pop it back in.
That time my knee didn't relocate and I couldn’t feel from the knee down. I ended up having a major operation in 2014: VMO Advancement and a MPFL Ligament Reconstruction in an attempt to stabilise my knee. Alhamdulilah it worked. I was followed-up with an arthroscopy in Feb 2019 to assess degenerative wear in my left knee. Let’s just say things can only get worse from here - but I will manage Bith’millah. (By the Will of Allah).
Digestive System:
It is common for people with hEDS to have bloating, constipation, heart burn, acid reflux, Irritable Bowel Syndrome (IBS), and Gastro-intestinal Reflux Disease (GERDs). I know that long breaks between meals, dairy, fried and spicy food onset all of the above of me. I was supposed to have an endoscopy in May (camera to look in my tummy) - well the clinic was closed because of Covid-19. My rescheduled appointment got cancelled again so I guess we just have to wait.
Glow Bar have been my saviour during this lockdown. Their Yoni Moon Milk contains gut-friendly Prebiotic & balancing Shatavari. Not only will it help the friendly bacteria in your tummy, it will also be that giant hug of Cacao comfort you need during your menstrual cycle! It’s my favourite dairy free drink! I will write a future blog post about my experience with the Yoni and how it has helped with my PCOS. (Insha’Allah).
Bladder Control:
Subhana’Allah (Glory be to Allah) - this one gets me every time. Think key in your front door situation. Not just outside your house. Any moment, anywhere - you need to pee. I remember I couldn’t maintain a full bladder during a pelvic ultrasound, the doctor even put it in my report, the cheek!
Skin:
People with EDS are often told they have '“velvety skin”. Now you know my ultimate skincare secret - it’s genetic lol. This beauty does come at a price, I bruise easily from the slightest impact. The skin is a connective tissue so I guess this was inevitable. My cheeks pull quite far from my face and it amuses my husband. I am Elasti Girl. (guess the movie)
Fatigue:
Mood!
Physically and mentally it is a lot to manage, with or without medication. Your entire body is moving further than it should! It will continue to affect my life as there is no known cure at this moment in time for #hEDS. I am currently on a gap year from uni to allow myself to physically and mentally recover from the challenges I've faced.
Although change can be hard, it can also be viewed positively. For example, if I didn’t have my knee operation, I would have joined the Army. God knows, I might not even be here writing this blog!
Despite having a #hiddendisability like hEDS, I am and will always be the same sporty/goofy girl I was before, during and after the cuts, scrapes and brakes.
Simply Me,
Hypermobile Hijabi
