:fyi: Take a look at this - http://ift.tt/Ys673a
A blog post that sums up the basics of SB really well
Affichage des articles dont le libellé est bifida. Afficher tous les articles
Affichage des articles dont le libellé est bifida. Afficher tous les articles
samedi 27 septembre 2014
A blog post that sums up the basics of SB really well
A blog post that sums up the basics of SB really well
mercredi 24 septembre 2014
mardi 23 septembre 2014
School assignment help
Hello my name is Nicole Lockhart I am a highschool student in a business magnet class. I am writing a social enterprise business plan about spina bifida and to help raise awareness and money. Even though it is just a school project one day I hope to take it in to action. I need help from the spina Bifida community with feedback,interviewing people,getting personal stories and doing surveys. If anyone here is interested in helping me Id highly appreciate it. Please email me at lockhartnicole2015@gmail.com
Thank you for your time
-Nicole lockhart
Thank you for your time
-Nicole lockhart
School assignment help
vendredi 19 septembre 2014
Welcome Miss Brynn Veronica!!
So she's here!!! Born 9-17-14 @ 11:49 AM. 7 Lbs 6 oz!! She was taken to Children's Hospital about 2 hours after birth, and had surgery Thursday morning (I got to have her vaginally, so they let me be discharged early so I could be there when she got her surgery). Her surgery took just about 2 hours, and docs said it couldn't have gone better!! It has officially been called a "Sacral Meningocele". When she was born, the defect was 75% skin covered. She came out kicking and crying, and moving everything down to her little pigs! Have had no need to to cath or anything (except 1 time after surgery yesterday, which they told me they might have to do to the anesthesia). No need for shunt as of yet, but ultrasounds after surgery of her head were as normal as normal could be (ultrasounds of her kidneys and bladder have all been good too)! She is still moving her legs and toes and responding to touch after the surgery! Just wanted to share this new little princess with you!! Hoping and praying that all she has after this rough start to life is a cool scar to talk about (although if anything comes up, I know it's God's plan, and I'm ok with that too :o)
Welcome Miss Brynn Veronica!!
jeudi 18 septembre 2014
150th country ratifies UN convention on disability rights
150th country ratifies UN convention on disability rights
dimanche 14 septembre 2014
C-Section or Not?
So I pretty much don't have much of a say in the matter since using a GC. She is going the VB route. Worried the sac will rupture. Our baby is being induced this Wednesday. They also want medical students there to show what SB is. Concerned that they will interfere in the care and treatment of our baby. Again no say. Any thoughts? or am I just a worried mom. Thanks!
C-Section or Not?
vendredi 12 septembre 2014
newbie
hi there
buy the power of google i found you guys a few weeks ago and have been reading up on spina bifida occulta. i have had some problems since the age of about 10 years old but never really understood what it was all about.
when i was about 10 my mum noticed i was not walking quite as i used to and was limping a little and not putting the heal of my foot down properly when walking...thats when it all started. i remember going to the docs and various hospitals a good few times and different tests being done. i had no other problems apart from my legs ached like hell (still do)Turned out my left leg was longer than my right by about 2.5cm....long story short i had pins put in my left knee to try and let the right leg catch up and be a more equal length . the pins were in for a few years i guess and now my RIGHT leg is now the longer one ha ha ...they got that a little wrong!...i have a raise inside my shoe to balance things out a bit better now.
i have generally always suffered with pain in my back and legs that ache often and easily but ive never really questioned it..i was only 10...had a couple of operations and that was that....ive put up with the back and leg pain ...it doesnt take much at all for me to have sciatica / hamstring pain and ive had months off work due to me thinking im ok to do certain D.I.Y jobs etc...over do it and hey presto i cant walk far or that well....i dont walk that well at the best of times and much prefer the pushbike or car...walking is tough on the legs hurting and back if i go TOO far
i hurt my back a few months ago and during our chat i was talking about my medical history and he just mentioned spina bifida ...i thought wonder what that is and found here. I had a follow up app today as i have never been told any of this and "apparently " my parents were not aware...even though it states it in doctors letters...maybe they were just internal letters and they were not told?...anyway...i go there today...he was running behind but said ive got all your records lets have a read through it to put your mind at rest....all i did was get shown too letters ( was a Big file) and asked do you have your phone on you...you can take a picture of the letters if you wish!....im still none the wiser really.....it does state spinal abnormality and spina bifida occulta.
this is what it says ...hope it makes sense to some of you !?
this is from one doctor to another after some kind of test......
we know there is a spinal abnormality and you have also commented that the bladder diverticulum and thickened bladder wall surgests some functional disturbance related to dysraphysm. ( i remember my mum telling me my bladder does not empty fully but thats about it )
in another letter it says....
there is a spina bifida occulta of the first sacral section with a poorly defined spinous proccess of L4 and there is a slight thoracolumbar scoliosis convex to the left pedicle at L1 however the water soluble myelogram was normal and the GSF protein was 35mm/100ml ...??
radiographs show a defect in the lamina of S1 with widening of the inter-pedicula distance at L5-S1??
Does any of this make any sense to you as All i have ever been told is my bladder does not empty fully and you need a operation to sort your legs out.....i do find it hard to believe my parents were not told...or i was not either really?
I know i am still very lucky and things could always be worse but i feel pretty low at the moment ;-( ...
god im really waffling on about stuff now are nt i ...Sorry....
Paul ( UK)
buy the power of google i found you guys a few weeks ago and have been reading up on spina bifida occulta. i have had some problems since the age of about 10 years old but never really understood what it was all about.
when i was about 10 my mum noticed i was not walking quite as i used to and was limping a little and not putting the heal of my foot down properly when walking...thats when it all started. i remember going to the docs and various hospitals a good few times and different tests being done. i had no other problems apart from my legs ached like hell (still do)Turned out my left leg was longer than my right by about 2.5cm....long story short i had pins put in my left knee to try and let the right leg catch up and be a more equal length . the pins were in for a few years i guess and now my RIGHT leg is now the longer one ha ha ...they got that a little wrong!...i have a raise inside my shoe to balance things out a bit better now.
i have generally always suffered with pain in my back and legs that ache often and easily but ive never really questioned it..i was only 10...had a couple of operations and that was that....ive put up with the back and leg pain ...it doesnt take much at all for me to have sciatica / hamstring pain and ive had months off work due to me thinking im ok to do certain D.I.Y jobs etc...over do it and hey presto i cant walk far or that well....i dont walk that well at the best of times and much prefer the pushbike or car...walking is tough on the legs hurting and back if i go TOO far
i hurt my back a few months ago and during our chat i was talking about my medical history and he just mentioned spina bifida ...i thought wonder what that is and found here. I had a follow up app today as i have never been told any of this and "apparently " my parents were not aware...even though it states it in doctors letters...maybe they were just internal letters and they were not told?...anyway...i go there today...he was running behind but said ive got all your records lets have a read through it to put your mind at rest....all i did was get shown too letters ( was a Big file) and asked do you have your phone on you...you can take a picture of the letters if you wish!....im still none the wiser really.....it does state spinal abnormality and spina bifida occulta.
this is what it says ...hope it makes sense to some of you !?
this is from one doctor to another after some kind of test......
we know there is a spinal abnormality and you have also commented that the bladder diverticulum and thickened bladder wall surgests some functional disturbance related to dysraphysm. ( i remember my mum telling me my bladder does not empty fully but thats about it )
in another letter it says....
there is a spina bifida occulta of the first sacral section with a poorly defined spinous proccess of L4 and there is a slight thoracolumbar scoliosis convex to the left pedicle at L1 however the water soluble myelogram was normal and the GSF protein was 35mm/100ml ...??
radiographs show a defect in the lamina of S1 with widening of the inter-pedicula distance at L5-S1??
Does any of this make any sense to you as All i have ever been told is my bladder does not empty fully and you need a operation to sort your legs out.....i do find it hard to believe my parents were not told...or i was not either really?
I know i am still very lucky and things could always be worse but i feel pretty low at the moment ;-( ...
god im really waffling on about stuff now are nt i ...Sorry....
Paul ( UK)
newbie
lundi 8 septembre 2014
New Member Here
My name is Nathan, I'm 31 years old and was born with Spina Bifida Myelomeningocele and Hydrocephalus. For the majority of my life, I've been healthy thankfully. When was 23 years old and in the middle of my college academic career, I was diagnosed with renal (kidney) failure and spent nearly three years on hemodialysis. During that time, I was in school for about a year-and-a-half full-time and then reluctantly left to focus on my health. I was given the gift of a kidney transplant from a live donor whom also happens to be my dad through a protocol called the "A.B.O." Incompatible Kidney Transplant in Los Angeles back in 2009. I returned to school and graduated with my degree in Business and am now working for myself.
I played wheelchair basketball for over 20 years with an adult team and spent one year with a youth team when I was in high school and was able to travel out of state. I've worked in collegiate athletics and interned for a semi-professional hockey team as well. In additiion, I've coached basketball at the high school and middle school levels. Finally, for nearly two years I was the director for a youth sports league for children with special needs. Now I spend my time consulting with nonprofits and am asked to give speeches in my community.
At this point in my life, I think the only part missing is a relationship. I've been on dates with a few women but could never secure a long-term relationship. I suppose that's been my biggest struggle. Hopefully that will change in the near future.
I look forward to contributing here and letting anyone here know that despite having Spina Bifida (or knowing a family member or friend who does), it doesn't have to let it stop us even if there are setbacks. Sometimes these setbacks are there to give us opportunities to go on to something greater than we had imagined for ourselves in the first place.
I played wheelchair basketball for over 20 years with an adult team and spent one year with a youth team when I was in high school and was able to travel out of state. I've worked in collegiate athletics and interned for a semi-professional hockey team as well. In additiion, I've coached basketball at the high school and middle school levels. Finally, for nearly two years I was the director for a youth sports league for children with special needs. Now I spend my time consulting with nonprofits and am asked to give speeches in my community.
At this point in my life, I think the only part missing is a relationship. I've been on dates with a few women but could never secure a long-term relationship. I suppose that's been my biggest struggle. Hopefully that will change in the near future.
I look forward to contributing here and letting anyone here know that despite having Spina Bifida (or knowing a family member or friend who does), it doesn't have to let it stop us even if there are setbacks. Sometimes these setbacks are there to give us opportunities to go on to something greater than we had imagined for ourselves in the first place.
New Member Here
jeudi 4 septembre 2014
Need help. I'm lost.
Hi everyone. My daughter was born with spina bifida and it has affected her immune system. She has been bed ridden for the past three years. Matter of fact she's had to drop out if school due to her breathing problems. They are so severe that she can't get out of bed most days to use the bathroom. She caths so she uses a urinal in her room. The breathing problems stem from mold in our apartment that no one will take care of. The landlord says just spray it with bleach but it's too deep for that to go any good. The only thing we can do is move. I forgot to mention that she has a severe allergy to mold. No one will help not my family or friends. I feel invisible. I do all I can to save money. I work full time and sell on etsy and eBay. I've gotten so desperate that I actually wrote to Ellen. I also started a fund raiser but with no support. My brother actually told me it makes me look greedy. Well if wanting my daughter to have a life and breath is greedy then yeah I guess I am. She has to stay in her room where her air filter is. She only has her iPad to entertain her. And we live in Florida where it's always hot. The heat bothers her and since the apartments insulation is so bad she has to have black out curtains. So in a sense she's living in a dungeon. I don't know where to go or who to turn to. I feel do beaten down. I feel do helpless not bring able to help my child. I feel I'm losing myself. She's the most wonderful human being and doesn't deserve this. Do any of you have any suggestions? Anything. I've been told to contact the health dept but they would honestly condemn this place. I'm really begging for advice. Thanks
Need help. I'm lost.
mercredi 3 septembre 2014
mardi 26 août 2014
Police failure to recognize apparently problematic behaviour may be due to disability
Police failure to recognize apparently problematic behaviour may be due to disability
Progress for PWDs in Ghana
http://ift.tt/1vJIwXb
FYI - Ghana is one of only a few African countries that has been a stable functioning democracy since independence - no coups, rebellions, civil wars, etc. unlike practically all it's neighbours in the tropical western region of Africa, where policies and accommodations for disability are largely non-existent.
FYI - Ghana is one of only a few African countries that has been a stable functioning democracy since independence - no coups, rebellions, civil wars, etc. unlike practically all it's neighbours in the tropical western region of Africa, where policies and accommodations for disability are largely non-existent.
Progress for PWDs in Ghana
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