PrimordialDwarfism.com

 

Welcome to PrimordialDwarfism.com, a site dedicated to educating and supporting families affected by Primordial Dwarfism.

First, a definition... Primordial Dwarfism is a category of disorders with many subtypes. The exact definition can vary from one type to another, but all are defined primarily by extreme short stature at birth. Unlike many other forms of Dwarfism, Primordial Dwarfism differs in that all of the bones and organs of the body are proportionally smaller than in an average person. When looking at a picture of an individual with Primordial Dwarfism, it can actually be difficult to realize how much smaller than an average person they are, unless there is something else in the photo to use for comparison.

While evidence suggests that Primordial Dwarfism has been around form many centuries, it is only in recent years that medical science has advanced to the point where those affected by these disorders have been diagnosed and placed into one of several identified sub-types.

Some of these subtypes are:

Majewski osteodysplastic primordial dwarfism (MOPD) type I           Seckel Syndrome
Majewski osteodysplastic primordial dwarfism (MOPD) type II Russell-Silver Syndrome
Majewski osteodysplastic primordial dwarfism (MOPD) type III Meyer-Gorlin Syndrome

More information about the various types of Primordial Dwarfism can be found in the Medical Information section of the website, or by visiting the National Institute of Health's Library of Medicine website at http://www.nlm.nih.gov/. The purpose of this website is to provide as much useful information as possible to any families affected by Primordial Dwarfism, as well as to those in the general public who are interested in learning more about these disorders, and the people affected by them.

The picture below was taken at a the 2007 National Convention of Little People of America, in Seattle, WA, where a remarkable total of 24 children and young adults with Primordial Dwarfism attended the conference, and they are pictured here along with some parents and medical staff.

Seattle, WA - July, 2007

Our mission statement is:

To improve the quality of daily living for our children. To provide both a professional and personal support system for our families and to always remember this is not about or because of our children but for our children. (Because of the lack of information and documented cases families are being misinformed concerning prognosis, quality of life and just what to expect.) We will pioneer this project in hopes to make a better world for our families and those to come.

Also, please visit the website of the Potentials Foundation, a non-profit organization dedicated to assisting families affected by Primordial Dwarfism. The foundation has done a wonderful job helping several families with all kinds of issues, from attending LPA Conventions to receiving Medical diagnosis and care. They are a great resource for information, assistance and reaching out to the families of children with Primordial Dwarfism. If you are interested in making a contribution to assist these children, there is information on the website about how you can make a tax-deductible contribution.

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