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Do you know that achondroplasia is now on a very good research to find a pharmaceutical treatment that will improve growth specially in large bones?, this will make the bones growth normally. Since 2003 in Spain (Dr Jesus Pintor Just/Complutense University) and in Japan (Dr Ueda K / Okayama Japan), very good results so far, but still in a research. I had a Baby girl with achondroplasia, and nobody told me about this, no matter if is still on research but its a hope, I already ask little people of America but I dont have any answer, does somebody knows about this research and how they are going?
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Replied on Wednesday, July 15, 2009 12:00 AM
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Guest
Dear Zully I have the same problem, my Baby girl born with achondroplasia,if you know some new treatment,please let me know.
ps: if you want change some impressions please write me.
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Replied on Monday, October 12, 2009 12:00 AM
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Hi Phil, sorry did not see the message until now. How old is your baby?. For this moment I did not contact yet the doctor in Spain, I will write to him today, to see whats new, I know that everything is running very good, but not as far as we wish.... but still a hope. My baby already walks, everything just like a normal kid, she walks at 13 months, and already says some words like mom, dad, etc. So For me is kind of normal, just her height.... we are happy know, much better, some time I am sad, but no much, most of the time, I am doing good, what about you?, do you have other kids?. Sorry if i have mistakes, I am from Mexico, and my English sometimes is not too good. :]
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Replied on Saturday, January 23, 2010 12:00 AM
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Hi Phil, sure I will let you know, I will contact the doctor in Spain, I know everything is runnig good, but not as far as we want... my baby is now 14 months and she walks perfect and run for all the house, everything good, and no complications, thand God!, Only her height. What about your baby, how old is her?
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Replied on Saturday, January 23, 2010 12:00 AM
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Guest
Hello Zully,
I would also be intersted in news about a medical treatment [there is research on it in Portland as well], we are from Europe and Emily is 3 and a half now with achondroplasia. She will undergo her first limb lengthening next February (but it would be much better with medical treatment!!) she has got so much complications yet and she can`t walk alone by now , can`t speak like her friends.... it`not so easy for her, for us and for her sisters. I´d wish any hope for her future. Best wishes
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Replied on Monday, December 14, 2009 12:00 AM
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Guest
Hi Emily, Sorry for my delay answer, did not see your message until today. I didnt know that the limb lengthening can be done at this age [3.5] I read about is beteween 7-12 years, is a new technique??, I will like to know and please I wish you that everything will run ok on the operation, We will pray for Emily, I know she will be just find, please let me know how is she doing. I will let you know everything about the treatment and all the researches, but still on investigation, nothing is aproved yet, And we need the treatment as fast as is possible... and all the research in the University Complutense of Madrid (Spain) is pay for the association of parents with childs with achondroplasia, is just private with funds... Emily for all is very hard to face this kind of situations, but we have to try and never give up... If is hard for us, imagine for her... May I ask why she can not walk, it is for the limb lengthening, or what is happening with her?, ...Keep in touch and SMILE!!!!,
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Replied on Saturday, January 23, 2010 12:00 AM
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laureen (Guest)
hey all, so im doing my project on achondroplasia. i have found all i need for it. although i cannot seem to find the history, like who discovered it and if the disorder is increasing or decreasing. if any of all know the history or something that could help me find something on it other than it was discovered on chromosome 4 in 1994, that would be great. thanks.
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Replied on Monday, October 12, 2009 12:00 AM
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Hi Laureen, I know Dr Jesus Pintor in Spain he probably know everything you need, he is very friendly and english speaker. Look for him at Complutense University, he will answer, tell him that I give you his name, and tell him that I am working on the project we have, he will know. I bet he can answer you a lot of questions, fast and with a lot of humor, he is in charge of the research for the treatment for achondroplasia. Please go for it and help us to find a treatment for this kids
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Replied on Tuesday, October 13, 2009 12:00 AM
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Guest
Zully, do you know how I could contact Dr Jesus Pintor?
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Replied on Wednesday, November 11, 2009 12:00 AM
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alaka56 (Guest)
hey i am a student of unilorin in nigeria and i am researching on achondroplasia. i need to know something about its history and discovery but it seems like am not finding answers... i need sombody on this pls...
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Replied on Sunday, October 25, 2009 12:00 AM
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I know a very good achondroplasia service in Lucknow, India,. It is headed by Dr. Vipul Shah. I was recently in his clinic and witnessed an achondroplasic child being lengthened in both the legs by amazingly 10 cm each, and the child was happy, she wasnt crying one bit. He also liasons with the genetics department of SGPGI and does research for which he has been awarded the young research scientist award by the govt, and is amazing. In Delhi he is at Maharaja Agrasen Hospital, Ashok Vihar, where my son who suffers from cerebral palsy is, and he is really the best.
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Replied on Tuesday, December 29, 2009 12:00 AM
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Thanks very much for share this info. We will pray for your son, I hope everything will go find with him. We are from Mexico
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Replied on Saturday, January 23, 2010 12:00 AM
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Guest
Dear Tanay, You are kindly please requested to post the complete address of the doctors in both Lucknow and Delhi.
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Replied on Tuesday, February 16, 2010 12:00 AM
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dr vipul shah pediatric orthopedic and spine surgeon ,fi hospital burlington chauraha lucknow-226001 vipulshak@rediffmail.com phone-9305542233 maharaja agrasen hospital ashok vihar new delhi phone-09313635117[ankur]
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Replied on Sunday, August 8, 2010 12:00 AM
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Guest
hi
thank you very much for this useful info. My nephew has been recently diagnosed with achondroplasia. this info would be very useful. would also like to know, if u know someone in mumbai who can help
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Replied on Sunday, August 8, 2010 12:00 AM
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Georgedarshana (Guest)
Hello dear all, I am George Darshana from Sri Lanka. I have read all your kind comments.My younger daugther who is 4 yrs and in perfect condition, but dr's identified as Achondroplasia. Yes we can see her height and all others are normal. Thank god. I am glad to hear about Tanay's and Laureens' comments. I will surely contact these two dr's. I am now searching how we could make my child as a normal child by leangthening her limbs or if any pharmaceutical treatments are available.I would be grateful if someone can help me to find these contact details. May god bless you.
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Replied on Friday, March 5, 2010 12:00 AM
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Molly21 (Guest)
Hi,
I am 12 yaers old and 7 months ago I got offerd limb lengthing and I turned it down. I am from England and would have been in a wheelchair for 6 months if I had had this done.
Thanks
Molls
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Replied on Sunday, March 21, 2010 12:00 AM
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chunsiew100 (Guest)
Do you have any painful spells on your legs. My son 17 years of age is suffering with pain. He is Essex, England.
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Replied on Monday, February 6, 2012 12:28 PM
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Hi.im from South Africa.my daughter who is now 5 years old was diagnosed with acondroplasia at the 1 year of age.goin to a normal school and coping very well.a FIGHTER TOO!gets some ear aches,but not so often as 3 years ago.can anyone help me with what sought of treatment they have tried that worked?can i get some feedback if stemcell treatment is effective?
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Replied on Wednesday, January 5, 2011 12:25 PM
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Heyy i am doing a project on gentic disordiers and i picked achondroplasia, It has moved me in soo many ways. If you would please inboxx me If you would like to come to my school and talk about it i would very muchly apprishate it..
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Replied on Friday, February 25, 2011 6:00 PM
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