Hey all
My son is 18 and has been diagnosed at the age of 16 with bullea after a life threatening lung collapse. He has had several collapses since and has recently had a bullectomy and pluectomy (pls forgive spelling) so basically his lung has been stuck to his chest wall to stop the collapsing, he also had a biopsy and it has come back saying he has emphsema and fibrosis, there is no specialist clinic for him as it is so rare. I am beside myself and looking for a support group, he has been told he will be lucky to live a normal life (eg wheelchair and oxygen) beyond 30 I need to talk, can anyone help with a link or experience?
Sarah
My son is 18 and has been diagnosed at the age of 16 with bullea after a life threatening lung collapse. He has had several collapses since and has recently had a bullectomy and pluectomy (pls forgive spelling) so basically his lung has been stuck to his chest wall to stop the collapsing, he also had a biopsy and it has come back saying he has emphsema and fibrosis, there is no specialist clinic for him as it is so rare. I am beside myself and looking for a support group, he has been told he will be lucky to live a normal life (eg wheelchair and oxygen) beyond 30 I need to talk, can anyone help with a link or experience?
Sarah