Re: RSS adults, a question

[Guest guest]

Hi ,

Yes, RSS is a form of primordial dwarfism as several people have

already said. There are well over two hundred forms and RSS happens

to be one of them. There are two basic types - skeletal dysplasia and

growth hormone disorders. Achondroplasia is an example of one of the

skeletal dysplasia types, while RSS is an example of one of the growth

hormone disorders. I think that people who have achondroplasia have

more or less become the " poster children " for people's stereotypical

idea of what a dwarf is because it's the most common occurring type of

dwarfism. I'm not sure of the exact statistics (maybe someone else

can help me out here), but I think it occurs once in every 40,000

births and the chances of an average sized couple having a baby with

achondroplasia is one in four. So, it's much more common than other

types of dwarfism including RSS. That said, however, I've had ongoing

discussions with some other adults as to whether they identify

themselves as a dwarf. I do, but others don't. I'm also on the

shorter end of the RSS spectrum (at 4'1 " ), while others are not. So,

yes, it is technically a form of dwarfism (which means that all of the

disability laws that are in place - ADA, IDEA, Sec. 504, etc. - can be

used to protect those of us with RSS), but many people do not identify

as a dwarf. Does that make any sense?

~Hillary

[Guest guest]

Hilary...I haven't been at a convention for RSS for years but I do remeber a

prof there saying that RSS kids don't actually have a defficiancy in growth

hormone......so to attempt to boost RSS kids growth twice as much gh was needed

than on non RSS children who ARE defficient in growth hormone.Is that thinking

out of date now? Also...I would say (tho' I don;t actually know!!) that classic

RSS children have some kind of skeletal dysplasia as well.....because they are

slightly out of proportion...head to body ratio....tho this is most noticable in

the early years of life and seems to lessen in appearance as they get older.

Just my thoughts.........such as they are.......

Eileen

lapapillondegrace hillary.jorgensen@...> wrote:

Hi ,

Yes, RSS is a form of primordial dwarfism as several people have

already said. There are well over two hundred forms and RSS happens

to be one of them. There are two basic types - skeletal dysplasia and

growth hormone disorders. Achondroplasia is an example of one of the

skeletal dysplasia types, while RSS is an example of one of the growth

hormone disorders. I think that people who have achondroplasia have

more or less become the " poster children " for people's stereotypical

idea of what a dwarf is because it's the most common occurring type of

dwarfism. I'm not sure of the exact statistics (maybe someone else

can help me out here), but I think it occurs once in every 40,000

births and the chances of an average sized couple having a baby with

achondroplasia is one in four. So, it's much more common than other

types of dwarfism including RSS. That said, however, I've had ongoing

discussions with some other adults as to whether they identify

themselves as a dwarf. I do, but others don't. I'm also on the

shorter end of the RSS spectrum (at 4'1 " ), while others are not. So,

yes, it is technically a form of dwarfism (which means that all of the

disability laws that are in place - ADA, IDEA, Sec. 504, etc. - can be

used to protect those of us with RSS), but many people do not identify

as a dwarf. Does that make any sense?

~Hillary

[Guest guest]

,

The three laws that I mentioned in my last post were the ADA, IDEA and

Sec. 504. Sec. 504 was passed first and is a rehabilitation act. The

Americans with Disabilities Act (ADA) was passed in 1990 and has four

main titles. The law deals with making public spaces accessible for

people with disabilities and prohibits discrimmination based solely on

disabiltiy. The Individuals with Disabilities Education Act (IDEA)

was passed in 1997 and deals with the way in which children with

disabilities are educated. Basically, it's in place to help ensure

that kids with disabilities get the same education as those who are

non-disabled. The ADA defines a disability as a condition that

impairs one or more life function. Life functions include things such

as walking, working, communication, etc. Recently, the Supreme Court

ruled that eating and metabolic functions are also considered to be a

life function (which is a no brainer to me, but has now been

officially recognized by the courts). This particular ruling came

about after a woman with diabetes brought a discrimmination suit

against an employer. I would say that your daughter probably falls

under that definition of disability, yet I'm not a lawyer (not yet, at

least ). I think this is the kind of info. you were looking for

but if it wasn't, or you have further questions, feel free to either

post or email me.

Happy New Year,

Hillary

21, RSS