Re: need help - questions from Spanish support

October 7, 2005

,

I have a couple of thoughts regarding the 28 year old

RSS adult... the very first thing that entered my head

after I read your email was whether or not this

individual's RSS diagnosis is correct. Some of the

syndromes that cause short stature and forms of

dwarfism are even rarer than RSS and equally as

difficult, if not more difficult, to diagnose than

RSS. The only reason I wondered about the correctness

of the diagnosis, is that perhaps he is not receiving

all of the therapy or medical care he could or should

be getting with a different diagnosis. I'm not really

sure what you can do with that info., but that was my

first thought.

My second question was in what ways is he at the level

of a 12 year old? Emotionally? Intellectually? This

question crossed my mind because I wondered if there

were learning disabilities that had not been addressed

and if those could be addressed now? I'm

embarrassingly and woefully ignorant of the education

and human services systems in Argentina, but is it

possibly for him to get some sort of assessment? Or

is it possible for him to get some sort of career

development (if he were in the States I would suggest

a visit to Voc. Rehab. - is there something similar in

Argentina?).

I emailed someone I interned with at the National

Council on Disability who is now working in the area

of international human/civil rights and asked about

rights this individual may have in regards to

discrimmination and also if he (the lawyer) is aware

of any services, etc. that he (the RSS adult) could

take advantage of to maybe increase his quality of

life. I'll let you know when I hear back.

~Hillary

23, RSS

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