Hi Everyone,
I hope you are all well and pain free?
What a year 2020 has been. Who would of thought this pandemic would be our new reality. On January 1st we all celebrated and were so excited to be heading into a positive new decade. That sadly did not last long.
This year has been incredibly sad for my family, as our beautiful Mum died in September. She had Alzheimer's and was in a rest home with 24 care. Sadly, a resident pushed her over and she broke her hip. She made it through a entire hip replacement, but then developed a blood clot and died of a stroke on the 29th September in New Zealand. We were devastated and it also meant that I could not be with my gorgeous big sister, as we are thousands of miles apart and we are now grieving without each other. Thank heavens for Whatsapp video chats, just seeing her and crying together has really helped so much.
It has been another 2 years since my last post and this was because I still have not had any definite results from my skin biopsy. The gene (COL1A1) which would definitely indicate that I had Classical EDS has never been located, but nor has any other gene to determine what type of EDS I have. To be honest, this never really crosses my mind anymore and I am no longer waiting for the label I always felt I needed. I received a call a while back from my genetic counselling service who said that they feel there is a lot of evidence that I still do have Classical EDS, but without locating the gene, they can not say that I have it. And that was that. No more skin biopsy's, no more waiting and no more wondering.
I have become part of a new medical study in 2019. An article has been written about patients with Classical EDS who have also developed vascular complications. So my medical history, along with 7 other unidentified patients, will now start a new dialogue in the medical realm, that perhaps Classical EDS has other strings to it's bow after all.
My Mum always said that EDS made me a little bit different from others, because it made me more special. As I grew older, I did not always agree her, especially with all my scars. But now I do believe that EDS have given me a very big gift. It has always made me realise how lucky I am to be healthy. It has made me realise that life is such a special gift and not to take anything for granted. And it has made me realise that 'different' and 'special' is a great way to be. I will always be so grateful that my Mum instilled these beliefs in me.
Until next time, be safe, happy and grateful for the things you do have in your life today.
Love from Rowena XXXXXXXXX
