236 ~ Making the world listen – 1/2 ~

From time to time I often talk or allude to the name Aaliya – my fellow Dys advocate. She was sent as a magical blessing in August 2019 – related in chapter 170 👇

https://kayborninmay.wordpress.com/2019/09/16/170-a-huge-breakthrough/

Since seeing many readers have only heard her name, and some understandably forget, asking who she is? I felt it imperative for you to read and know Aaliyas life narratives as penned by this amazing champ herself ❤️

Posted June 20, 2018

by Aaliya E.

I first read the words “Ehlers Danlos Syndrome” when I was fourteen years old. A life defining moment that I won’t ever forget.

It was late at night, well into my summer holidays, even so, I was meant to be asleep. Instead, frustrated and in pain I was searching the internet for clues, like any detective in the books I loved, trying to channel their ways of uncovering information and putting puzzles together. It seemed like an exercise in futility.

I had spent a thousand nights before this searching for the exact same thing and had never come up with any answers, any diagnosis, that fit just right. But on that night my life changed.

A mother in America had written a story about her children having Ehlers Danlos, a genetic disease that they had inherited from her. She had never been diagnosed and with limited access to specialist doctors in their small town, the hospital eventually began to suspect her and her husband of abusing their children.

Not an uncommon assumption when it comes to Ehlers Danlos because of the constant injuries, dislocations, scarring and bruising that are often extreme and don’t match up with the activity that caused it.

Reading that woman’s story that night clicked with me on a deep level like nothing ever had before. Here was somebody, a world away from me, who was going through exactly what I was. The symptoms, the pain, the injuries, all unexplained and confusing. This woman after years of searching had found her diagnosis and I, in turn, found my peace.

I spoke to my mother the next morning, made her read the story, and clarified that in my desperation I hadn’t just seen what I wanted to. We went to my paediatrician that same day. And just like that, my bubble popped. “If you had Ehlers Danlos Syndrome, we’d know.” He set aside my printed research and dismissed me. “We know something is wrong, and most likely everything that’s happening is connected, but we’ll probably never really know what it is.”

For him that was satisfactory. No need to be proactive, to find answers or treatments, we’d just roll with the punches as they came. Looking back, I sometimes question why I didn’t walk away then and there. Why didn’t I insist that we at least talk to doctors that had more experience with the disease? Why didn’t I ask why he was so sure that we would have known before then if it was EDS?

At the same time, I know the answer to that. Every doctor before him had questioned my sanity. And it wasn’t just doctors. From teachers to family members and even friends, I was accused of attention seeking, being a hypochondriac, having a low pain tolerance, being a moan.

It was often suggested to my parents that my Type-A personality and need for perfection was causing me stress and it was manifesting physically. I would benefit far more from a trip to a psychologist than all these trips to the doctor. Thankfully my mother has been my champion. Picking me up, fighting for me, watching over me.

It took another four years, three spinal surgeries, and multiple other health complications to confirm what I knew in my gut. I had Ehlers Danlos Syndrome. Confirmed clinically by a professor of rheumatology in South Africa, and then again by a well-known rheumatologist in London.

In the thirteen years since I first read about EDS and the nine since I’ve been diagnosed, I’ve watched the EDS community grow. I’ve been incredibly grateful for the work of the EDNF and their determination to share information. It’s a priceless commodity for a girl in South Africa who can’t just up and move to places with better access to doctors that have EDS experience.

I’ve managed, out of necessity, to build up a really great group of doctors for myself through much trial and error and although they don’t have much exposure to the disease or have opportunities to learn from a lot of patients, they’re willing to read through the endless papers I compile and do their own research.

These are the front line heroes of my everyday life. The behind-the-scenes heroes are my parents, family and friends who have banded together to always make sure I don’t feel alone when times are toughest. These are the people who survived the EDS litmus test and didn’t bolt for the heels when the explanations got complicated.

With all of that, it doesn’t change the reality of living with this disease every day. My EDS has taken a hold of my body. With damage to nearly all of my joints from constant dislocations, subluxations, inflamed muscles, tendons and ligament damage, and severe spinal issues, the pain doesn’t stop.

The tachycardia from my dysautonomia was constant and debilitating to the point that I had to have a pacemaker implanted at 25. A prolapsed mitral valve with regurgitation, severe digestive problems, issues with stabilising my intracranial pressure leading to blinding headaches, bruising, scarring, severe fatigue, open abscesses that took years to heal.

And that’s only the beginning….

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