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Double Zebra
Rare diseases are highlighted on Rare Disease Day each year. This year we featured Nail Patella Syndrome combined with Hypermobility Spectrum Disorder!
In Adults, Community, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Marfan Syndrome
Posted Hypermobility Awareness Week 2019
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, [...]
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Rare Diseases: A double-zebra
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 [...]
Because it could change a life: Marfan Syndrome
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 [...]
When Modern Feminism Isn’t Inclusive of Disability
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 [...]
In Adults, Chronic Illness, Disability Awareness, Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome, Pain Management
Posted Top 10 most challenging symptoms of hypermobility conditions
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 [...]
By Liz Harvie
In Adults, Anxiety, Chronic Illness, Emotional Impacts, Grief, Identity, Pacing, Psychology & Counselling, Thought Management
Posted Finally getting a diagnosis
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
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 [...]
The daily realities of Marfan Syndrome
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. [...]
Finding my voice through Marfan Syndrome
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. [...]