I can only describe what happened as a miracle. I made an appointment at the Hypermobility Clinic in London before Christmas, taking the first available appointment at the end of March. I was desperate to get an appointment but then at the same time we found out that we will not have private medical cover after 5th February. Knowing full well that we will have to pay for the Hypermobility Clinic ourselves – ouch. A week ago, I was contacted by the Clinic and somehow was offered an appointment on the 25th January (Friday). Both Jacques and I were stunned after the call. How could this be? We realised what that meant – it will all be covered by our private medical insurance.
Today I met Dr Ian Chikanza. What an angel! For the first time in a decade someone was able to explain to me what my body is going through. He asked me if I can do the elephant walk - that sparked a very funny conversation with some demonstrations. I wonder what the receptionists would think walking in at that precise moment, seeing a South African being showed by a Zimbabwean doctor how to do "the elephant walk" :). Today I got a confirmed diagnosis for hEDS and was also diagnosed with POTS (Postural orthostatic tachycardia syndrome) and some other stuff I can’t remember. A diagnosis I knew I had, which was discussed many times with many doctors but until now remained undiagnosed.
And that people, is why we are called Zebras – we earn our flipping stripes!!!! The floodgates are open as I’m typing this. I just walked in from London and started typing because I want to give God all the glory – He never fails me, never leaves me, never forsakes me, always loves me and holds my hand. To Jesus I give all the glory for this appointment and for such a kind and understanding doctor who has all the knowledge and who for once, asked me the questions. I am thankful beyond words that His timing is impeccable.
This week I confirmed and finalised my first two talks where I will join EDS Support UK to talk to primary school kids about being different. We will teach them what genetic illnesses are (in a fun way and at their level of understanding) but will focus on the fact that we are all different in various ways. There is an amazing book written by Dr Louie Lightfoot called Ezra’s Extraordinary Stripes. The book is written in a narrative style and does not use diagnostic labels, instead, the focus is on creating a common language, which children can understand and use to make sense of how they are feeling. Although this book is written with children experiencing EDS in mind, it may also be useful to those who struggle with:
· Low self esteem
· Difficulties with trusting others/making friends
· Difficulty in asking for/accepting help
· Feelings of isolation and loneliness
· Feelings of being different
· Coping with a long-term illness or disability
I will share my story of being a zebra and that we can still pursue our dreams, and to never give up on them regardless of our difficulties. I will talk about my Everest Base Camp hike and take the kids with me on this adventure. The school is very supportive and will help raise money towards EDS Awareness. More detail on this in an upcoming blog.
“It must be hard to smile sometimes,
When you’re hurting deep inside…
But that just makes you stronger,
So wear your stripes with pride!
And remember if you’re lonely,
With me you do belong.
And although your body’s frail sometimes
Your spirit’s oh so strong!?”
Ezra’s Extraordinary Stripes – Dr Louise Lightfoot
