I’d like to talk about cultural perceptions of dwarfism, but
I need to do more research first. It will be a while before I can speak
first-hand of our own experience, since Belalu is still so young and her
condition is not yet apparent to most people who meet her. So, for now, I’m
reading and searching the Internet (though I don’t get much Internet time here,
so it’ll be a long-term project).
However, one thing that has struck me right away is the fact
that the only type of dwarfism named in the various foundations they have here
is acondroplasia. So, as far as I can tell, if we want to connect to other
families here in Spain, we would join a group dedicated specifically to
acondroplasia. If you want to learn more about other types of dwarfism and
didn’t speak a language other than Spanish? Well, I’m not sure what you would
do. In none of the Spanish pages I’ve read so far have other types of dwarfism
been mentioned, other than in a passing phrase such as “y otros tipos de
enanismo”. It is quite shocking to me that when dwarfism itself is already so
marginalized in society, that all but one type is not even highlighted by these
foundations dedicated to promoting awareness. I should emphasize that I don't get a lot of Internet time here, so I am only sharing my first impressions, but in terms of easily accessible info on hypochondroplasia in Spain, I have not come across any.
Also, I wanted to connect with people here in Vigo, and
while there is a specific group here, Fundación Magar, which says that one of
its purposes is to help families connect to each other, there is no explicit
info on how to do this on their site. I sent an email on Thursday, but haven’t
heard anything yet. I’ll keep you posted on my progress.
Hi, a few things come to my mind here... hypochodnroplasia is at least 10 times less common than achondroplasia, maybe more... some say 1:15,000 for ACh and HCH is about 3-4 in a million, so that would make it even less frequent. So any LP group that you go to, the vast majority are going to have ACH. Like in Ireland there were about 100 families at convention last year and 3 had HCH including Fi and about 5-6 others had anything other than ACH. I also think that some of the families who have another type of dwarfism don't end up going to these meetings after some time as the vast majority of people have ACH and a lot of the talks and meetings are about that. In the UK group there are max 10 HCH families and we are talking a country of 60 million people...
ReplyDeleteThe other thing that was a complete shocker to me is that very often in Europe they will still say that HCH is a milder form of achon and genetic testing isn't even available in some countries to differentiate, almost like "to make it simpler for the doctors" - this is what the president of LP Hungary wrote me upon my inquiry. The third thing is that HCH families on the whole tend to manage very well and often they don't seek out LP support groups...Now you know why I am so excited about our mini get together in October, it is actually a HUGE thing...
First off let me say that from your posts and pictures that you had a wonderful vacation traveling everywhere! Second let me say that I hope you find more families near or around Spain that have children with hypo! Good luck with searching!
ReplyDeleteI really hope that you connect with some other HCH parents. But I do understand that since Hypocondroplasia is so much less frequent than Achon, it may be few and far between that you locate families. Either way, embrace ALL the families with little people that you can find. Achons, etc.
ReplyDeleteBTW, Belalu is such a cutie pie!
Hello there
ReplyDeleteI guess I have a hypo daughter. Gene test results not arrived yet. Its nice to find blogs like this. Its hard to gain information bout this syndrom. I ll post next time i get the results.
Love from istanbul
Hello! Getting the diagnosis is such a relief- then you know what you are working with and can move on from there. Please do stay in touch, and you can certainly email me privately, too, if you want to talk more. Good luck on getting an answer soon.
ReplyDelete