Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 Jodie I realise you mean well but from everything I have read and been told by doctors RSS is a type of dwarfism related to Achondroplasia and other forms. The term 'midget' is deemed offensive and I'm not sure can be applied to RSS people. You could ask the adults on the site wheteher they consider themselves to be midgets. Best wishes Eileen Jodi Zwain magicrss@...> wrote: Jodi R. and others, While the older literature refers to RSS as a form of dwarfism, it is not really technically correct. A dwarf is someone who is out of proportion and looks more like someone with achondroplasia. Our kids fit the " midget " category, which is short stature and in proportion. Short stature is under 4'11 " . HOWEVER, you and your kids will definitely benefit psychologically if you refer to having RSS as a " growth disorder. " It sounds better, people don't jump to conclusions and envision one of the seven dwarfs from Snow White, and it is just plain easier to comprehend. It is amazing how a little change in wording can make all the difference in the world. Meanwhile, speaking of psychological terms and situations, I have Max home AGAIN because he is vomiting. (Never in my life did I think that throwing up and vomiting would be such a normal and regular part of my vocabulary!!!) I truly believe that this is psychologically based. Each time Max is out of school for more than a couple of days, he goes through this on the second day back. Dr. H. prescribed the Transcop patch that is put behind the ear for motion sickness, so I am trying it out today to see if it helps. The only problem is that it says it takes 4 hours to be effective. At least there are no ketones for now. I think I will put him on " gut rest " and bolus feed him through his g-j button. He HATES the pump, so this may work. Sigh. There is always something. Jodi Z. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 I'm afraid I'm going to have to agree with Eileen on this one. RSS is a form of dwarfism. There are two main types - skeletal dysplasia and primordial dwarfism. The skeletal dysplasia forms of dwarfism include achondroplasia. The primordial forms of dwarfism are do not involve any type of skeletal dysplasia and result in proportionate short statured individuals. The term midget was coined at the turn of the 17th century in conjuction with P.T. Barnum's exhibition of Tom Thumb, a proportionate short statured dwarf, who historians and experts now believe had GHD. The term " midget " is considered to be offensive by much of the dwarf and greater disability communities because of it's association with that period of exploitation through display of those with various short stature causing conditions. In the last ten years or so, those of us within the dwarf and disability communities have been trying to distance ourselves from those sorts of conotations. If anyone is interested in learning more about dwarfism in general, they can visit Little People of America's website at www.lpaonline.org. Ther is also a *fantastic* new book out called Little People: The World Through My Daughter's Eyes by Dan Kennedy (I know you can find the book on amazon.com, b/c that's where I got it from). He is a writer who's daughter has a form of dwarfism called achondroplasia. He does a really good job detailing the history of dwarfism and the evolution of terminology within both the dwarf and the disability communities. ~Hillary 21, RSS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 I was told that RSS is a form of dwarfism. It is just a rarer form that many don't/didn't know existed. It was explained to me that most people think of dwarfs as having disproportionate limbs to their bodies, but those with RSS are proportionate, but still considered dwarfs. Simply because they do have the shortness in stature. But, yes, you can also say that RSS is a growth disorder. One of my cousins is an Achondroplasia dwarf. Just what I have been told, Jodi R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi Jodi, Hang in there with Max. Hopefully it will be better soon. Judith, Steve, (RSS) and (non RSS) almost 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 I saw so many email postings on this topic, but having been off the listserve (I took a break from " MAGIC " for two weeks) I don't have time to read everything. Everyone is kind of right. -Silver Syndrome IS a form a primordial dwarfism. Other types of primordial do include achrondroplasia. But these are distinictly different types. So a child with -Silver syndrome is technically a dwarf. However, because most general public folks will immediately " mentally picture " an RSS child as being achrondroplastic, this causes problems. Hence, most of us just tell folks that our children have RSS - a genetic growth disorder that causes them to be shorter in stature and to have difficulty gaining weight, often with a lot of intestinal issues. The problem is that achrondr. have skeletal dysplasia, and therefore can NOT use growth hormone, without serious risk to their health. RSS children do NOT have skeletal dysplasia; they may have limb asymmetry but this is NOT skeletal dysplasia. I hope that this helps clarify things. Salem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 --...the origional post stated that RSS children were not dwarves but infact midgets! I really don't want to open this whole can of worms again but that was the initial gist which I took great umbrage at!!Eileen - In RSS-Support , " magicrss " wrote: > I saw so many email postings on this topic, but having been off the > listserve (I took a break from " MAGIC " for two weeks) I don't have > time to read everything. > > Everyone is kind of right. > > -Silver Syndrome IS a form a primordial dwarfism. Other > types of primordial do include achrondroplasia. But these are > distinictly different types. > > So a child with -Silver syndrome is technically a dwarf. > However, because most general public folks will > immediately " mentally picture " an RSS child as being > achrondroplastic, this causes problems. > > Hence, most of us just tell folks that our children have RSS - a > genetic growth disorder that causes them to be shorter in stature > and to have difficulty gaining weight, often with a lot of > intestinal issues. > > The problem is that achrondr. have skeletal dysplasia, and therefore > can NOT use growth hormone, without serious risk to their health. > RSS children do NOT have skeletal dysplasia; they may have limb > asymmetry but this is NOT skeletal dysplasia. > > I hope that this helps clarify things. > > Salem Quote Link to comment Share on other sites More sharing options...
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