My journey with EDS hasn’t gotten any easier but I have found ways to cope with it

Posted June 7, 2019

By Nthabeleng R.

I was born in a small Southern African country called Lesotho. Growing up I was an energetic child but was referred to as clumsy for the most part of my childhood and at some instances, ‘lazy’ for I got tired a lot which now I know I experienced a lot of fatigue even as a child. It was however, around age 12, I noticed that I wasn’t like most of my peers, as I experienced a lot of joint pain and winter days were the worst. Lesotho is one of the coldest countries in Southern Africa as we are one of two countries that experience snow in winter and this would make me very grumpy as I was never able to explain my pain to any one.

My first dislocation was of my jaw and it was the most horrific pain I’d ever experienced as a 12-year-old. Unfortunately for me this was just the beginning of a long battle with dislocations and discomforts to come. I was attending school in South Africa at the time, but around 15 years of age I moved to Botswana where I experienced the brunt of my dislocations, from shoulders, knees , elbows , hip, pelvic , ribs, etc. As if that were not enough, things took a turn for the worst once I noticed my skin starting to present signs of sagging and extreme elasticity. Then subsequently discovered I had gastric issues; I couldn’t digest most food and was always in pain after eating, and at times my tummy would grow so big I would look expectant after a minute of eating.

I wrote my final high school exams with my arm in a sling due to shoulder and elbow dislocations. During this period I saw a physiotherapist three times a week. With all this I was still not sure what was wrong with me, as we treated symptoms as they came.

I seemed to react adversely to almost everything. If I got stung by a bee it was always an emergency situation. I would also experience difficulty in breathing when the weather changed. Before I was due to leave for university, my mother decided it would be a good idea to seek the help of a homeopath doctor in a bid to try understand what was essentially wrong with me. This proved to be great as he was able to pick up certain issues and foods I was intolerant to. I was able to start university while paying close attention what I ate. However as time went by I started experiencing various new symptoms, such as extreme dizziness and collapsing, which I quickly attributed to low blood pressure, as it is a condition my father suffers from. But time proved that it was not the case when my condition worsened, December 2010, for I ended up in hospital extremely weak I could barely walk without dropping, my muscle tone was extremely low.

Towards the end of that December—I had no idea what happened—but I woke up after days in the ICU unit under what seemed like a million machines. In my disoriented state, with little to no memory of anything, I barely recognized my own mother. I had temporary amnesia but after about 500 tests the doctors were stumped, as they still couldn’t find what the problem was.

Desperate to find answers one doctor suggested I get admitted a mental rehabilitation centre where she believed they had the best neurological machines and if there were any issues with the brain they would pick it up. Hesitant but desperate for answers I agreed to be admitted. I spent weeks at the centre but all we got from it was that I was extremely sane and that I exhibited intelligence that surpassed most. Yet we still had no idea what it was I was suffering from. I felt alone.

I got discharged but was practically in hospital every other day or week. In 2011 I got worse and there was a point I couldn’t walk, talk, or eat much. Water was the only thing that managed to go down and stay down.

During 2012 things got better and I attempted to go back to school, which was extremely difficult as my memory had not made a full recovery and my body was still weak. I started researching about my symptoms and stumbled upon Ehlers-Danlos syndrome. I found an online group called Inspire and I started communicating with the doctors which I believed where from the USA and Canada. As I explained my issues and story it was agreed that I indeed had EDS but we needed confirmation.

One of the doctors subsequently wrote a letter requesting a neurologist to carry out a test to confirm that I do have EDS. Ironically I found myself back with a neurologist that had once called me a hypochondriac when he could not understand my condition previously. However, with the instructions from the doctor from the USA she confirmed I scored 9 out of 9 and that indeed I had EDS, and she politely apologised for previously accusing me for being a hypochondriac. Finally I had a diagnosis, but this didn’t mean much as 98% of the medical practitioners everywhere I went had no idea what EDS was or how to treat it.

So began my uphill battle that left me with a lot of homework. Although I formally studied property and construction, I started studying all there was to know about EDS on my own time. I came across various connective tissue disorders and other related conditions along the way. So every time I would get sick I would pray I enter the hospital conscious so I can be able to explain my condition and help guide the doctor. Often I fought with doctors, as most due to pride couldn’t simply admit they didn’t know anything about EDS.

In 2014 I had an accident where I sustained head and chest injuries and broke over ten bones down my spine. A spine specialist told me EDS saved my life due to the bendiness of my joints: for some reason the impact didn’t shatter my spinal cord. I spent close to a year in rehabilitation and I can walk today. I started experiencing seizures and convulsions that neurologists found extremely hard to understand.

During 2016 my symptoms increased. We discovered my heart was also weak alongside my bladder, kidneys, lungs, joints, and blood vessels that we were already aware of. I had to be withdrawn from school and I didn’t finish my degree. Things got really bad. I saw no substance in living in so much chronic pain and always having to explain yourself. My sisters supported me a lot but it took a long time for my mother to accept that I had a rare disease no one had heard of. People would often tell me I didn’t pray enough, as if that in and of itself was reason for said rare condition. And due to lack of finances I still don’t know the exact type of EDS I have genetically for I have never had a genetic test.

In 2017 I decided to moved back to Lesotho alone without my parents and started Rare Diseases Lesotho Association (RDLA) which helps people in Lesotho with rare diseases by raising awareness nationwide, whilst I also simultaneously raise awareness on EDS in all the Southern African Countries I have lived in, South Africa, Botswana, Namibia, and Lesotho. Last year we created Rare Diseases African Alliance. This year in February, Rare Diseases Namibian Alliance was birthed and on Rare Diseases day it had its first seminar where I was humbly honoured as an activist and advocate for EDS and other Rare Diseases.

My journey with EDS hasn’t gotten any easier but I have found ways to cope with it and being able to helps others live close to a normal life in these circumstances makes it all worth it.

 

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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