Posted
Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
While the whole of May has become the month to recognise & raise awareness of The Ehlers-Danlos Syndromes (EDS), we have chosen one week, May 25th-31st to raise awareness of HYPERMOBILITY, [...]
In preparation for Rare Diseases Day, 2019, I was able to interview Tianne, 24, who lives with both Ehlers-Danlos Syndrome and Marfan Syndrome (yes, it’s possible to have two connective tissue [...]
Marfan Syndrome awareness month is upon us again! If you’ve followed my blogs in the past, you’re probably thinking “here we go again; she’s talking about Marfan Syndrome AGAIN” however [...]
I’m going to be contentious here. I have a problem with the modern feminism movement. I am a feminist; wholeheartedly and unashamedly. But part of being a feminist is holding both yourself and [...]
I recently did a survey of our online community about their biggest struggles relating to living with their hypermobility condition. These people have a variety of diagnoses including Generalised [...]
Relief. Reassurance. Validation. Shock. Denial. Anger. Grief. Acceptance. Peace. Self-respect. These emotions all stem from finally getting a diagnosis. I’m 44 and live in the UK. I [...]
Dear Ehlers-Danlos Syndrome, I thought you had me. I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them [...]
At the beginning of February, I made a vow to write at least one blog post a week in aid of Marfan Syndrome Awareness Month. That has proven to be a very challenging task, but I’m trying. [...]
My life with Marfan Syndrome has been incredibly challenging, to say the least. But do you know has been one the amazing things for me? I’m finding my voice through Marfan Syndrome. [...]