I have not shared this properly here for various reasons but 3 months ago, just before my gallbladder removal surgery, I got an answer to why I’ve been getting progressively ill. I was diagnosed with a genetic condition called Ehlers Danlos Syndrome (EDS with hypermobility and POTS, with suspected Mast Cell Activation Syndrome – MCAS).
Knowing this has changed my life in more ways than one. First, I know what is going on in my body and even more important – that it is real, not just all in my head as so many doctors made me believe. If not for my new physician, neither I nor my son would have received the treatment(s) we need to survive (forget thrive) in this world. That is for a whole other post!
Second, my physician(s) and I are slowly coming up with a treatment plan that should hopefully solidify and stabilise in the next 6 to 8 months. I now have a total of 2 General Practitioners, 4-6 specialists, 4 physiotherapists and 2 mental health professionals treating me as this is a multi system problem, and all of whom take my condition seriously. While life has changed irrevocably, I can at least live it with purpose and support.
Third, it has helped me and my husband get all the support our son needs and set him up properly to live with a genetic condition that can cause innumerable restrictions.
May is EDS awareness month. Throughout this month, every day, I will be sharing facts to raise awareness about EDS. I will also get out of my wheel chair as much as possible and walk 1000 steps every day to raise money for Hmsa Charity – a phenomenal charity that helps families with hypermobile syndromes.
Advaith, who has also recently been diagnosed with hypermobility, will be walking with me to raise awareness. He will also make a presentation in his class to share this with his friends and teachers.
To learn more about EDS, how you can support a person with EDS & contribute to further research so that people like us can live better lives, please join us in this May EDS Awareness Campaign and contribute in this link whatever small amount you can. We are doing this fundraising campaign in support of the Hyper Mobile Syndromes Association Charity, whose resources have been so helpful for me in understanding about EDS, hypermobility & finding the right help to live well.
https://donate.giveasyoulive.com/fundraising/supporting-hyper-mobility-syndromes-association
I will also be joining, whenever possible, the #MyEDSChallenge from the EDS Society to share my journey and my life with EDS. Throughout May, I will be sharing facts to raise awareness about EDS, my personal experience so far, resources for EDS patients and their loved ones, as well as new research and advocacy matters.
Join me and thousands of proud Zebras around the world to advocate, fundraise for and support EDS (and HSD) patients.
First step, updating My Story in this blog!
I am a burned out international lawyer & mother with Fibromyalgia and anxiety, trying to re-discover my identity.
