The 2017 Diagnostic Criteria

Media PackThe long-awaited 2017 criteria for EDS and the associated papers have been released! Phew!

The new nosology includes 13 types of EDS.
Many of these are new to the classification table, they are not newly described though as it has been 20 years since the last classification in 1997. (You can find the old 1997 Villefranche classification in my ‘Types of EDS’ post from a while back.)
This is very exciting for those people with diagnoses of these rarer types. They have finally been properly recognised as members of the EDS family!  Continue reading

Rare Disease Day 2017

Rare Disease Day 2017In case you missed the memo, today is Rare Disease Day 2017!

Added together, rare diseases are not rare. Around 1 in 10 people have a rare disease.
A disease is classified as rare when it affects fewer than 1 in 2000 people in Europe.

2017 is the 10th Rare Disease Day and has a theme of research. I’m going to talk a bit about the new EDS research and diagnostic criteria due to be released very shortly. Continue reading

#PledgeForParity – Women’s Day 2016

International Women's Day

International Women's DayToday is International Women’s Day.

Women’s day is a day to celebrate the achievements of women and recognise how far we have come but also to realise how far we have left to go. Many people fall into the trap of thinking we have “no need for feminism any more” and that “women are equal now”. Women may be equal in many aspects of law and in theory but certainly not in practice in the real world and certainly not in the hearts and minds of many.
It is an unfortunate fact that women are still not paid equally to their male counterparts, women still are not present in equal numbers in business or politics, women still lose their jobs because they get pregnant and globally women’s education and health care is worse than that of men. Women throughout the world suffer high rates of gender based and sexual violence leading to the deaths of two women per week at the hands of a violent partner in England and Wales alone. Women of colour and women with disabilities suffer proportionately more due to the intersections of race and disability.

The theme of this years Women’s Day is the Pledge for Parity, the idea is anyone and everyone can make a concrete pledge to take a step toward increasing gender parity. You can read about the pledge on the International Women’s Day website.

I have chosen the pledge to help women and girls achieve their ambitions. I think I can contribute toward this through my volunteer work with the HMSA and I also really want to volunteer with Look Good Feel Better once I’ve finished my course and help women whose appearance has been changed by cancer feel more confident again.

Coco ChanelI’ll leave you with a quote from the timeless Coco Chanel:

“A girl should be two things; who and what she wants”

Are you making a pledge for this Women’s Day? Have you posted a pledge selfie?

#NOTD: Masquerade Glitter

In all of my last minute preparations to go to the HMSA Masquerade Ball I somehow completely forgot about my nails! I have come up with this quick mani for the evening and it even matches my outfit:

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I thought I would take a quick snap to show you all my hair and nails while I wait for my ride to the Ball.
22230362984_f98b020971_zI have attempted to put a bit of curl and volume into my hair which has taken me most of the day with a lot of rest breaks and the amount of hair that I have – putting my arms up to do my own hair makes them very vulnerable to dislocations so rest breaks are a must. I think it looks pretty good – I do hope it stays in OK!

I’m really looking forward to the ball and I hope it raises lots of money for the charity. The HMSA are only a small charity but they punch above their weight with the amount of people that they help/support and also the amount of time they spend educating medical professionals about the different hypermobility syndromes which include Joint Hypermobility Syndrome, Ehlers-Danlos Syndromes, Osteogenesis Imperfecta, Marfan Syndrome and many more.