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  • Biff and The Fatigue Monster
  • Millions Missing 2019
  • Surviving a Crash When You Have a Chronic Illness
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  • The Realities of ‘Back to School’ in a Chronic Illness House
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    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
    October 20, 2017
    The Politics of ‘Labels’ in Schools and the NHS
    August 15, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    Why Is School Stressful When Your Child Has A Medical Need?
    February 16, 2017
    Working With School When Your Child Has Ehlers-Danlos Syndrome (EDS) – 5 TOP TIPS
    July 1, 2016
    Invisible Illness or Disability – A Quick Parents Guide to SEND and the Law
    July 1, 2016
    Dear headteacher…
    June 18, 2016
    My Teen’s M.E. Diagnosis – Three Years On
    June 16, 2020
    Biff and The Fatigue Monster
    February 14, 2020
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    Top Tips for being a Professional Patient
    April 4, 2018
    7 Top Tips to survive a crash and still be mum
    February 11, 2018
    95 Things NOT to Say to Someone with EDS or HSD
    December 20, 2017
    Biff and The Fatigue Monster
    February 14, 2020
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    7 Top Tips to survive a crash and still be mum
    February 11, 2018
    Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
    October 20, 2017
    The Politics of ‘Labels’ in Schools and the NHS
    August 15, 2017
    The Reality of Fatigue
    May 30, 2017
    Why Is School Stressful When Your Child Has A Medical Need?
    February 16, 2017
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    Top Tips for being a Professional Patient
    April 4, 2018
    Burnout – 8 Signs of Caregiver Burnout
    July 31, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    Brunel Physiotherapy Lecture – A Round Up
    May 15, 2017
    EDS Kids Handbook – The Memes
    May 2, 2017
    Life Swaps – Managing Chronic Illness
    November 9, 2016
    Childhood Pain
    October 17, 2016
    The A-Z of Ehlers-Danlos Syndrome (EDS)
    May 17, 2018
    The A-Z of Ehlers-Danlos syndrome (EDS) The Memes
    May 17, 2018
    95 Things NOT to Say to Someone with EDS or HSD
    December 20, 2017
    The Princess and the Pea
    June 19, 2017
    Ehlers-Danlos Syndrome (EDS) School Assembly Presentation
    June 6, 2017
    #ZebraDay 2017
    May 19, 2017
    EDS Kids Handbook – The Memes
    May 2, 2017
    Raising EDS Kids
    November 21, 2016
    Falls
    September 16, 2016
    I’m fine
    August 23, 2016
    Pilates in EDS and CMT
    August 5, 2016
    Pain
    February 10, 2016
    Children’s Physiotherapy
    November 20, 2015
    Dear CMT… A personal letter to my neuromuscular disease
    September 10, 2015
    Shoes
    July 25, 2015
    Acceptance – Learning To Trust The Journey
    July 1, 2015
    My Teen’s M.E. Diagnosis – Three Years On
    June 16, 2020
    Biff and The Fatigue Monster
    February 14, 2020
    Millions Missing 2019
    May 9, 2019
    Surviving a Crash When You Have a Chronic Illness
    February 25, 2019
    Grief and Acceptance in Chronic Illness
    February 25, 2019
    The Realities of ‘Back to School’ in a Chronic Illness House
    September 17, 2018
    Biff, Chip and Kipper – The Dance Show
    June 28, 2018
    The A-Z of Ehlers-Danlos Syndrome (EDS)
    May 17, 2018
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  • All About Sarah
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Chronic Illness Is A Rollercoaster Ride You Can Never Get Off
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Chronic Illness Is A Rollercoaster Ride You Can Never Get Off

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Life Swaps – Managing Chronic Illness
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Life Swaps – Managing Chronic Illness

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Childhood Pain
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Childhood Pain

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Hello Forty!
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Hello Forty!

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Falls
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Falls

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Why The Zebra? Why The Zebra?
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About Me About Me
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The Reality of Fatigue

By Sarah Wells May 30, 2017

Fatigue. Chronic debilitating fatigue. Now I don’t mean being tired, tiredness and fatigue are very different things. We all get tired, our lives are busy, we put far…

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Blog

#ZebraDay 2017

By Sarah Wells May 19, 2017

Today all around the world members of the Ehlers-Danlos community and their friends and family will be wearing their stripes to raise awareness of the Ehlers-Danlos syndromes and…

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Brunel Physiotherapy Lecture – A Round Up

By Sarah Wells May 15, 2017

Brunel University – Common (or not so common) Paediatric Conditions Last May I had the great opportunity of being welcomed to Brunel university to co-present a lecture on…

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My Love, Hate Relationship With Tea

By Sarah Wells May 12, 2017

The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl…

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EDS Kids Handbook – The Memes

By Sarah Wells May 2, 2017

The Memes from the upcoming ebook by Kendra Neilsen Myles and Sarah Wells, with a special section on Vascular EDS written by Deborah Roach.  A sneak peak into…

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Why Is School Stressful When Your Child Has A Medical Need?

By Sarah Wells February 16, 2017

Over the Iast couple of weeks I have had different conversations with people about their child’s school.Two families, at totally different schools, (and different schools to all my…

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8 Types Of People You Meet In Hospital Waiting Rooms

By Sarah Wells January 28, 2017

I spend far to much time in hospital waiting rooms, people watching helps to pass the time, keeps me sane. Somewhere between booking in and hearing your name…

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Dear Younger Self

By Sarah Wells January 16, 2017

Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed…

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Raising EDS Kids

By Sarah Wells November 21, 2016

Having a chronic illness or two is one thing but raising children with Ehlers-Danlos syndrome is another completely. I want to give you a little window into our lives…

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Blog

Life Swaps – Managing Chronic Illness

By Sarah Wells November 9, 2016

So, you’ve been diagnosed with a rare disease, perhaps you are unable to do some of the things that you used to be able to do, or you…

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  • About

    Hello, my name is Sarah. I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world, my passion for raising awareness of EDS, CMT and ME and how I raise my children to be happy with their perfect imperfections. My Stripy Life is here to provide you with regular fresh ideas about chronic health, wellness and navigating the ‘systems’.

    True strength is not just about overcoming obstacles it is helping others to overcome them. This is the true essence of My Stripy Life.

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