marywest's picture
marywest

asking info. about a DISEASE

Hello everyone ,

my sister has a daughter who is now 15 years old

when she was born everything seems ordinary but she tried to walk somhow later than normal children and when she learned to walk she fell down many times.She leaned on her knees to stand up.when she was 6 or 7 ,she fell down more times and after that in age of 11 she cant sood up without help and now she is on wheelchair.The worst thing is that her hands are also being disabled , all of her muscles are going to disabled .Doctors told them there isnt any way to solve their problem . I dont know the name of this disease but i heard a new medicine discovered for that ,named : TTC421. Does anyone know something about that or other healing way ? please help me and specially HELP my niece

oh , i forgot to say ,this disease is genetic

awaiting for your answer ,THANK YOU



acitez's picture
acitez

Ask your sister the name of the disease. You are more likely to get useful responses if you tell us that.

marywest's picture
marywest

i think the name of this disease is :
Lou Gehrig's disease

awaiting for your answer
thank you

acitez's picture
acitez

I wish it were something else. Lou Gehrig's disease affects half the children in a family if it has the genetic factor. I have a friend who works for the ALS foundation and she says that there are things they can do to help the patient, but that there is no cure, and that the disease is always fatal.
I am so sorry.
Keep looking, because maybe there is new information. I wish I had a happier answer.

marywest's picture
marywest

thank you for your kind words ,i also wish there was a good news
please can you ask your friend who works for the ALS foundation about TDI project ?
i dont know so much about this but i read about it in : www.als.net
thank you again for your attention

acitez's picture
acitez

It would probably be best if you contacted the ALS foundation directly. If I just try to remember what my friend says, I could get it wrong.

marywest's picture
marywest

somehow good news is that her disease is not Lou Gehrig . i found this name on internet after searching about this disease symptoms but my sister told me the real name of that disease which i forgot now but as soon as i find it i will tell you
thank you again