I am a 26 year old mother of four who was diagnosed at age 5 but had
no idea what I was in for I am now about to have my second hip
replacement within a few months I had glaucoma surgery a week and a
half ago I have constant pain in my knees ankles and collapsed left
hip I have 4 children I can barely care for my 8 year old son has
sticklers and had to undergo eye surgery last january to reattach his
macula and retina in left eye and laser in right to repair tears and
holes in retina and his orthopedic furture looks grim my 7 yr old son
is still undiagnosed he has a unusually high palate and will be going
to the retinal specialist sometime next week my 9 mo old twins have
not yet been tested and medicaid will not pay for the genetic blood
test so I don't know what to do I have lost my zest for life and fear
for my marriage as my husband has to take care of our kids and me I
feel alot of times people think I'm making this disease up doctors
don't even understand much my genetitist is my only person besides my
family who also has it are the only support I have and I need help I
need some one to talk to who knows how this feels please help me.
Nicole Reichrath