Our daughter, Joy, has achondroplasia, a form of dwarfism. I know we will find it quite common for both children and adults to have questions about her condition.
We wanted you to have a few basic facts about dwarfism:
- There are over 200 distinct types of dwarfism.
- There are no "cures" for Joy, although limb-lengthening has been used on some people.
- Over 80% of people with dwarfism have average-height parents and siblings. We don't know anything yet about her parents, and we probably will never know.
- Joy's adult height will be some where around 4'2", about the height of an average-height first or second grader.
- It is extremely rare to have retardation in conjunction with dwarfism; only a few rare types correlate to any type of mentally handicapping condition.
Terminology: the word "dwarf" is not used anymore among most of the short-stature community; it is seen as a derogatory, slang word. We will use the terms "short-stature," "little person," or "having dwarfism" in our home.
The LPA (Little People of America) Organization has been very helpful with information regarding the SN of dwarfism. We will become members once Joy is home. They have an adoption grant which we will apply for and should receive. We are so thankful for this organization and their assistance! If you'd like to visit their site,
please go to www.lpaonline.org.
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