I’m participating in a social media challenge started by Remember The Girls this week! The aim is to raise awareness of X-linked genetic disorders and specifically to talk about our own experiences of having an X-linked disorder as a woman. I will post 7 blogs throughout this week, with the below themes.
Day Two : What Remember The Girls means to me.
I am a new member of Remember The Girls so I can’t sit here and talk about everything I’ve learned over the years, friendships I’ve made etc. but I can say the presence of the Facebook group specifically and their social media presence has made me feel less alone.
I read, listened and have learned that there are many women in similar situations to myself around the world. Mothers dealing with guilt whilst looking after their ill children. Women feeling brushed off by medical professionals whilst experiencing very real symptoms. Women facing the hard decision of whether or not to try for a biological family due to the genetic disorder they carry.
Remember The Girls strives to bring women with X-linked disorders together for support. Many women are diagnosed after their children’s diagnosis and often don’t know any other X-linked disorder carriers to chat with. They are often lost with ways to help themselves, ploughing everything they have into their children’s medical care with a building anxiety for their own and are often lost within a system that can still unfortunately struggle to listen to women.
As I began my new normal last year, I quickly realised the term ‘carrier’ was met with very mixed feelings from professionals and patients alike. I will get more in to this tomorrow for day three’s blog but having a group like Remember The Girls to turn to at times of confusion over terms like this, alongside all of the other points I mentioned above is invaluable.
If you have or know of someone with an X-linked disorder, please take a look at Remember The Girls social media accounts below.