Remember The Girls : Day Six

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 Six : How I Raise Awareness.

I’m relatively new to the X-linked disease community but I have been involved in raising awareness for a number of different health-based issues for a quite a few years now. I have been passionate about talking about Diabetes, migraine, Autism, anxiety, Ehlers Danlos Syndrome, POTS, Hashimoto’s Disease, brain tumours and wheelchair use through my blogs. I regularly donate to charities close to my heart and I enjoy joining in with awareness days and activities relating to them.

Communication is key. Talking openly about our own experiences so others going through similar issues may not feel so alone is so important. If you don’t have personal experiences to draw from or bring awareness to, listening to those that have is vital. Stand with people. You many never be able to understand what someone is going through but you can hear them and help make their story visible.

As my life moves forward through the disastrous mess of 2020, our family are going through a lot of changes. We’re hoping for a house move to somewhere a lot more accessible and my husband is becoming my full-time carer. I hope to be able to focus more on my writing and involvement with charities once we’re a bit more settled. Watch this space I suppose!

If you’d like to read some of my previous posts which are based around raising awareness of particular issues, take a look at some of the links below.

Normal Humans – Autism

Just As Important – Anxiety

He Should Be Walking – Ehlers Danlos Syndrome

Rare Disease Day – Rare diseases

Please take a look at Remember The Girl’s social media links below.




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