<TABLE cellSpacing=0 cellPadding=0 width=600 border=0> <TBODY> <TR> <TD width=20><FONT size=7> </FONT></TD> <TD vAlign=top width=580> <P align=center><FONT size=7>Cartilage Hair Hypoplasia <br> Information Center</FONT></P></TD></TR></TBODY></TABLE>
 

Cartilage Hair Hypoplasia

Information Center




Welcome to the CHH information site.  This site contains links to CHH related information, pictures, links to the listserv and CHH personal websites.


Billy Barty and Casey Hubelbank.
Billy was the founder of Little People of America in 1957


Cartilage Hair Hypoplasia is a rare syndrome affecting the immune system and causing skeletal dysplasia.  It is also known as Metaphyseal Chondrodysplasia-McKusick Type . CHH is a recessive gene which means that both parents would have to be carriers of the gene.  The results are 25% average size no carrier,  50% average size carrier, and 25% CHH.    Currently out of 8000+ members in the Little People of America, only 40 have been diagnosed with CHH.  Using statistics from LPA, I have been able to determine that the odds of CHH in the United States are somewhere in the neighborhood of  1 in 1,150,000.  Each year at the National LPA Conference, there is a meeting of people with CHH usually hosted by one of the members of LPA's Medical Advisory Board.  Past presenters have been Dr. Wright, Dr. Francomano, and of course Dr. McKusick. 

  Dr. McKusick is the founding father for discovery of people with CHH.  Early in the 60's he set out to do research of the Amish. In the Pennsylvania Dutch Amish population, CHH occurs in 1 of every 1000 births. In Finland CHH occurs in 1 of every 23,000 births.

CHH Medical Information Links
This is a link to LPA's Medical Resource Center with Medical Information about CHH

LPA (Little People of America).
A support and advocacy group for people of short stature.

Immune Deficiency Foundation
The National Organization Dedicated to Research, Education, and Advocacy for Primary Immune Deficiency Diseases

Cartilage Hair Hypoplasia List Serv
An E-mail Support Network for people with CHH

Billy Barty Foundation
A Foundation dedicated to improving the lives of people with short stature.




A group of people with CHH in Salt Lake City


Casey and Lynn. Dr. Francamono is standing in the back.


Casey and Annie




This is Linda Hughs. She has CHH and has invented a machine to help us with our breathing problems.
Unfortunatly she has passed on.

 

 

 

Personal Websites or e-mails:

Casey Hubelbank's Website

Ricardo Gil's Site

Arturo Gil's Site




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Sign The CHH Guestbook



If you have any questions or comments send mail to:Casey
This Web Page and all it's contents are under the exclusive copyright of Casey Hubelbank.