If you've had a look through my social media at any point you'll know that Ehlers-Danlos Syndrome is very close to my heart. Why?
Because after 20+ years of persistently searching for answers and refusing to back down with medical professionals in charge of my care I was finally Diagnosed with Hypermobile Ehlers-Danlos Syndrome, also known as EDS type 3 in October 2020.
I had suffered for years in the medical system with lack of care, negligence, medical gaslighting, systemic racism, sexism and patriarchal BS.
I was fed up of being told that all of my health conditions couldn't possibly be linked, that I was making things up in my head, being told that I wanted to be sick and that the only thing wrong with me was my weight.
Apparently an apple a day, yoga and Losing stupid amounts of weight to reach a "healthy BMI" was all that was needed to save my existence.
It wasn't until I took charge of my health and demanded the appropriate care that I actually received my diagnosis, correct treatment and the validation I needed.
I was diagnosed with hEDS by Dr Brennan of Harley Street Clinic in London. He is a geneticist and an expert in the field of connective tissue disorders, particularly EDS. He is one of the most professional, kind and compassionate specialists I’ve ever come across in my life.
All of a sudden things started adding up for the first time ever. Every single one of my comorbidities could be linked to my hEDS. That then got me thinking about my pregnancies and the birth of my two children and miscarriage of one. It all of a sudden made so much sense why I faced certain challenges. That’s when the penny dropped.... I knew I wanted to support pregnant and birthing folk with EDS/HSD but I also wanted there to be a safe space for seasoned parents to talk, offload, make connections, share experiences etc.
I created a virtual birth village on Facebook for people touched by EDS & HSD in pregnancy & parenthood.
I wanted this to be a group for individuals that feel they have nowhere else to turn and may possible be walking the path of pregnancy and parenthood with little to no support because as we know, it takes a village, am I right?!
I want to fill the group files with tonnes of valuable information, resources and links so that all members can benefit.
All support groups were taking place on zoom however I felt that since I received international interest It made sense for me to create a group attached to The Humankind Doula Facebook page, that way people can come and go as they please, use or provide useful information so that we can build a successful hub of knowledge, love and care.
You can join the group using the following link:
Love, light and zebra stripes!