Ellis-van Creveld

16/3/05

*Introduction en Francais

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Dedication

This site is devoted to my little boy Angus who has Ellis-van Creveld syndrome. It is also devoted to the parents of other children with EvC who support me and teach me so much. Thank you!

 

Mission Statement

  • To inform parents about Ellis-van Creveld syndrome.

  • To facilitate parent-parent networking. Although information is important, sometimes the greatest comfort is obtained from knowing you are not alone.

  • To collect and share as much current medical information as I can about EvC and its treatment.

 

Introduction

I created this website predominantly for parents who have discovered that their unborn or newborn baby has Ellis-van Creveld (EvC) Syndrome. When my little boy was born I felt that the majority of information on the internet was overly clinical, and that I would have liked instant access to information on a more human level. Every child is different; some have very few medical problems with EvC, and others have many.

If you have just found out that your child has EvC you will be going through an incredible range of emotions. It can be hard to accept that this was nobodyís fault. You could have eaten the safest diet possible during pregnancy and treated your body like a temple, it would have made no difference. The EvC gene is so rare that very few people who have a child with EvC had any known family history of it. The chances of finding a partner with this gene are incredibly slim. You didnít do it on purpose! When it comes to genes you have to learn to accept that stuff like this just happens even to lovely people like you.

You will find all of the parents you encounter through the online support group absolutely adore their kids and are fiercely proud of them. We all agree that our kids are amazing characters and fighters!

For those of you who have EvC, I would welcome your input on how to cope with what life brings you. I have only been able to write about things from my point of view as a parent. As such I have focussed on the differences and physical stuff, but as Angus and all the other kids with EvC grow, theyíll want to focus on fitting in, coping with standing out when they really donít want to, and having a good collection of suitable put-downs for people rude enough to make unwelcome comments.

I plan to add to this website often, so if you have any suggestions or stories please send them in.


Disclaimer

This is a personal site and is not affiliated to any organisation. It receives no funding. The information herein is purely for educational purposes. I am a physiotherapist, not a doctor and nothing I have written here should supersede the advice given you by your doctors about your child. This information is designed to support, not replace, the relationship between you and your child's physician.

I have put in data gleaned from the most recent articles I could find, but because Ellis-van Creveld is a rare condition which is probably under-reported and under-diagnosed, no-one has truly comprehensive and accurate data. The figures stated are average ranges, but people being people, there will be some people with EvC who are exceptions to the rule.

 

Advertising Policy

There is no advertising on this site, nor are there any plans to have advertising on it in future. I do not endorse any products or receive any funding from advertising.

 

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This site was last updated 03/31/09

©Kate Lawrence (BscHons Physiotherapy) 2005

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