Links

16/3/05

Home
Description
Medical Stuff
Methods of Detection
Genetics
Growth charts
Stories
Photo Gallery
Living With EvC
Video Clips
Links
Glossary
References
Contact Us
About Us

 

Links

Ellis-van Creveld Syndrome 

  •        EvC Support Group Website

  •        This site was started by Patti Olesik, a wonderful woman, who along with her husband Joe, and Liz Surek realised the potential for group support on the Internet for parents of kids with EvC.

  •       EvC Parent Support Group

  •       This is a Yahoo group for members only. It is easy to join, just submit your details to have your membership OK'd. I have found the other parents I've met so reassuring and helpful, especially at the hardest times. Patti, Carol,  and I are the moderators. We share stories and photos, and give and receive advice.

  •       People With EvC

  •       This is a Yahoo group for members only. It is run by Alicia who has EvC

  •        Ellis-van Creveld Foundation (UK)

  •       You can find contact details here for Yvonne Sutton who can put you in contact with other families in the UK with EvC. Tel: 01621 829675 (evenings)

  •       Skeletal Dysplasias

  •     Information written about EvC and other skeletal dysplasias by Dr. Charles Scott who worked at the Alfred duPont Hospital for Children in Wilmington, Delaware, USA.

  •       Restricted Growth Association

  •       A registered charity (UK) supporting families where one or more members have restricted growth. They organise events like conventions and sports days. It can be great for your kid to compete in a fairer environment.

  •      Child Growth Foundation

  •        You can find contact details for this charity (UK) here. One mother I chat to online says that their conventions are a hoot because they cover restricted AND accelerated growth conditions, so the kids learn to accept one another's differences very quickly.

  •        Little People of America

  •        An excellent resource for people with restricted growth

  •        Online Mendelian Inheritance in Man (OMIM)

  •        The genetics site for professionals and scientists.

 

Congenital Heart Defects

  •        CHD Support Group (UK)

  •        This is a Yahoo group for parents of kids with congenital heart defects. It's run by Dan and he'll make sure you receive a warm welcome.

  •        Heartline

  •        A site for children with a CHD and their families. You don't have to join this to be able to use the message board

  •        Nemours Cardiac Centre

  •        The Nemours Cardiac Centre is in Wilmington Delaware in the U.S. They deal with all the cases of children with EvC from the Amish community so that makes them the world experts. I think they have some of the best descriptions and diagrams of congenital heart defects too. They also describe some of the procedures like cardiac catheter tests and echocardiography.

  •        Royal Children's Hospital Melbourne

  •        A site which also explains some of the heart defects encountered by our children

 

Respiratory Problems

  •        Aaron's Tracheostomy Page

  •        A great resource for parents whose kids have tracheostomies

  •        Aid for Children with Tracheostomies

  •        A UK-based charity providing practical support and advice for carers of kids with a  tracheostomy. They have a useful welcome pack for new members.

  •        Jeune's Centre

  • Part of the Columbus Children's Hospital website. You can find details of the lateral thoracic expansion operation here. This operation is fairly experimental (has been carried out on about 17 children), but if your child is still ventilated after the age of 2, it may be worth investigating. This should not be considered as a cosmetic procedure.

  •     VEPTR

  • The VEPTR (vertical expanding prosthetic titanium rib) is another type of procedure which can be used to expand a ribcage. Details can be found at this website, though it details the type of operation done to correct scoliosis (curvature of the spine) rather than chest expansion. The chest expansion procedure uses very curved titanium ribs, but the basic principles thereafter are the same. So far (2007) this procedure has been carried out on about 30 children. Email - lori.buegeler@christushealth.org - for more details. She is the head nurse for the project.

 

Orthopaedics

  •        Minnesota Limb Lengthening Center

  •        A site with clear pictures and x-rays of limb-lengthening and growth plate stapling. It does not refer to kids with skeletal dysplasias, however, so I put this link here merely for the pictures, not the text.

 

Home | Description | Medical Stuff | Methods of Detection | Genetics | Growth charts | Stories | Photo Gallery | Living With EvC | Video Clips | Links | Glossary | References | Contact Us | About Us

This site was last updated 03/31/09

Kate Lawrence (BscHons Physiotherapy) 2005