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  @sammyhakimvlogs5608Күн бұрын

  This was a great presentation.

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  @KC-qi7gn2 күн бұрын

  FIRST I’M ON THE WEGOVY SHOT NOW I TAKEN 3 SHOTS ALREADY I AM A 34 YEAR OLD SPINA BIFIDA ADULT WHEELCHAIRBOUND USER N I HAVE BEEN SINCE THE AGE OF 2 NOW N I AM/WAS BOARDER LINE DIABETIC (INHERITED IN ME MY GREAT GRANDMOTHER HAD IT (R.I.PEACE PRAYERFUL POWER GG) N MY DAD HAS/HAD IT BEFORE TAKING THE WEGOVY SHOT

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  @KC-qi7gn16 күн бұрын

  FIRST I HAVE CHAIT CATHETER THAT I USE N PUT IN MY STOMA N WARM WATER INJECTED A SYRING IN THE WORM WATER N PUT THE SYRINGE OF THE WARM WATER ON THE SIDE OF MY STOMACH N VOID (GO NUMBER 2) ON THE TOILET N I CATH THROUGH MY NAVEL (I HAVE A MATROPINOFF) A 14 FRENCH CATHETER N A BAG IS ATTACHED TO IT N THAT HOW I GO NUMBER 1 BOTH OF THESE SURGERIES I HAD AT THE AGE OF 9 IN 1999

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  @Homeskillete7422 күн бұрын

  Classic spina bifida tee- shirts 😂

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  @emilyanderson147324 күн бұрын

  A bit confused there’s two different titles

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  @KC-qi7gn28 күн бұрын

  FIRST I’M A SB 34 YEAR OLD ADULT I HAVE HAD TWO UTI’S THIS SUMMER (ONE IN APRIL N ONE IN MAY) N IN APRIL I ALSO HAD A SHUT REPAIR IN MY NECK PART OF MY SHUT IT HAD WAS DISCONNECTED SOMEHOW BUT MY FAMILY N/OR I NEVER KNEW WHY IT WAS N/OR WHEN IT WAS UNTIL APRIL I WAS SENT HOME/DISCHARGED WITH 3 DAYS WORTH OF ANTIBIOTICS (IT WE SUPPOSED TO BE 10 DAYS WORTH BUT THEY DIDN’T FILL THE OTHER 7 DAYS WORTH BUT THEY RAN OUT (THE HOSPITAL PHARMACY) b DUE TO THE LACK OF THE AMOUNT OF MEDS THAT I WAS SUPPOSED TO GO HOME WITH I WAS AT HOME FROM APRIL 16-20SOMETHING N THEN ENDED UP RIGHT BACK IN THE HOSPITAL FOR A 2ND UTI IN MAY

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  @KC-qi7gn28 күн бұрын

  FIRST I HAVE HAD TWO UTI’S THIS SUMMER (ONE IN APRIL N ONE IN MAY) N IN APRIL I ALSO HAD A SHUT REPAIR IN MY NECK PART OF MY SHUT IT HAD WAS DISCONNECTED SOMEHOW BUT MY FAMILY N/OR I NEVER KNEW WHY IT WAS N/OR WHEN IT WAS UNTIL APRIL I WAS SENT HOME/DISCHARGED WITH 3 DAYS WORTH OF ANTIBIOTICS (IT WE SUPPOSED TO BE 10 DAYS WORTH BUT THEY DIDN’T FILL THE OTHER 7 DAYS WORTH BUT THEY RAN OUT (THE HOSPITAL PHARMACY) b DUE TO THE LACK OF THE AMOUNT OF MEDS THAT I WAS SUPPOSED TO GO HOME WITH I WAS AT HOME FROM APRIL 16-20SOMETHING N THEN ENDED UP RIGHT BACK IN THE HOSPITAL FOR A 2ND UTI IN MAY

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  @davidbrian1436Ай бұрын

  I wonder if this video is sponsored by hospice. 😡😡😡

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  @dinosaysrawr29 күн бұрын

  Hospice care is awesome. Everyone I know who've been through hospice care (some of whom got better and were able to released!) has said it was a really positive and helpful thing, and they wish they'd sought it out sooner.

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  @joewade-1011Ай бұрын

  I have spina bifida I wasn’t supposed to live past the age of 10 but guess what I’m 45 now and living strong

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  @jennifermarotti8159Ай бұрын

  I just turned 46! Boy how times have changed. I'm a married woman with spina bifida

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  @beautynbraingirlhack9909Ай бұрын

  Wow nice..👏👍

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  @SuperSky079Ай бұрын

  I have a question, my daughter have spina bifida occulta she is one month old , MRI showing tethered cord , neurosurgeon saying she need surgery I want to ask is it 100% safe to do this surgery. Or is there any risk ? Can she overcome this tethered cord without surgery?

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  @lalithakumari2183Ай бұрын

  Same my daughter also same occulta tethered cord surgery safe or not plzz rply me

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  @Bhavna_Verma21 күн бұрын

  @@SuperSky079 which neurosurgeon you have consulted

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  @Bhavna_Verma21 күн бұрын

  @@lalithakumari2183 which neurosurgeon you have consulted plz help me my son has also this

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  @KC-qi7gnАй бұрын

  FIRST WATCH INSIDE OUT N INSIDE OUT 2 INSIDE OUT (IS FOR ALL AGES KIDS N ADULTS) N INSIDE OUT 2 (IS NOT FOR KIDS IT’S FOR PRETEENS/TEENS/YOUNG ADULTS N ADULTS (THESE MOVIES R AWSOME FOR PEOPLE THAT HAVE MENTAL N/OR PHYSICAL DISABILITIES/N/OR EMOTIONAL DISABILITES TOO N THIS MOVIE IS ALSO AWSOME FOR NON DISABILITY PEOPLE TOO N I ALSO HAD REPAIR SHUNT (THE PART THAT’S ON MY NECK) BACK IN JULY

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  @SuperSky079Ай бұрын

  My new born daughter have spina bifida occulta we did MRI now we are going to consult with neurosurgeon, she had a hole in her back when she was born...

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  @Bhavna_Verma21 күн бұрын

  Helo my son is also born with this

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  @alisonpoh7596Ай бұрын

  Does it mean that Laceys healing now ...being able to walk etc will not be permanent

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  @lindseysanders3656Ай бұрын

  I’m 42 and living with MMC. I’m still going strong with very few, if any, issues.

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  @user-zf7bk2bk8s2 ай бұрын

  Does spinabifida effect the growth of the penis

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  @KC-qi7gn2 ай бұрын

  FIRST I’VE HEARD OF A GAIT WAIST TRAINER OR A GAIT BELT N BTW WHAT MANUAL WHEELCHAIR BACK SHOULD U BE USING IF U R AN ADULT?

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  @KC-qi7gn2 ай бұрын

  FIRST OMG 😳 ENGLISH PLEASE? I THOUGHT THAT U COULDN’T SPEAK SPANISH?

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  @MelissaWhite-xn7qf2 ай бұрын

  Can you tell me who the speaker in this video is?

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  @KC-qi7gn3 ай бұрын

  HERE IN USA 🇺🇸 WE CALL THEM HOIER LIFTS ALSO IN USA THERE IS ANOTHER WHEELCHAIR COMPANY CALLED NU MOTION FOR ME NU MOTION TOLD ME THAT I SHOULD BE IN A MANUAL WHEELCHAIR CAUSE THEY WANT ME TO ROLL N GET EXERCISE N DAILY LIVING WHEN I WAS A CHILD N NOW AS AN ADULT) THERE’S A FAMOUS HERE IN USA SAYING IF U DON’T USE IT U LOSE IT

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  @KC-qi7gn4 ай бұрын

  FIRST FOR THE LAST QUESTION THE ANSWER IS YES THE DOCTOR'S WANTED ME TO HAVE BOTH SURGERIE'S AT AGE 3 BUT MY MOM THOUGHT THAT THAT WAS TOO YOUNG N BY AGE 3 I HAD ALREADY HAD SOOOOO..... MANY SERGERIES ALREADY N SO I HAD THEM BOTH TIME AT AGE 9 I AM NOW 34 YEARS OLD

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  @sumairanaz49914 ай бұрын

  hlo may baby boy sufring from spina bafida we do surgrey and now the to much pain in had and neck pain waht we do kindley help us plz🙏

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  @jessicamobley88474 ай бұрын

  Way to go, Maranda!

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  @KC-qi7gn4 ай бұрын

  FIRST WHEN IS THE WALK ~N~ ROLL IN GEORIA? (THE STATE)

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  @user-mh4bd1fp6k4 ай бұрын

  I'm 72 years old I aged out of spina bifida clinics more than 50 years ago where is the help for adults with spina bifida

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  @KC-qi7gn28 күн бұрын

  @user-mh4bd1fp6k where do u live?

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  @KC-qi7gn28 күн бұрын

  @user-mh4bd1fp6k Where do u live?

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  @KC-qi7gn4 ай бұрын

  FIRST THE EXECUTIVE DYSFUNCTIONING IS NOT ONLY IN CHILDREN WITH SB THE EXECUTIVE FUNCTIONING IS IN SPINA BIFIDA ADULT'S LIKE ME ALSO I AM A 34 YEAR OLD ADULT

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  @KC-qi7gn5 ай бұрын

  FIRST HAVE ANY OF U SB AWORRIERS HEARD OF A CHAT CATHATER N HAVE A STOMA IN YOUR APENDIX TO N PUMP WORM WATER INTO THE CHAT CATHETER USEING A SYRINGE?

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  @Homeskillete745 ай бұрын

  I feel the a.d.a doesn't exist

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  @user-is8lv6iz1y5 ай бұрын

  Salom bu kasallikda bõy õsmay qolishi mumkinmi meni qizimga SBO VS1 vaVS4 tashxisi qõyilgan oyoģi oģrib ôzi 5 dan oshsa ham 3 yoshga õxshab qolgan

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  @adelahumphries11356 ай бұрын

  Hi do people with SBO normally have severe weight problems later on In life or does It depend on how active you are?

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  @MUZLIM123417 сағат бұрын

  I did because we can’t walk or stand too much yet I eat like a regular person however I can’t eat like a regular person because I hardly move all day. I had this problem since I was a child now I have to get weight loss surgery

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  @lahoucinebinar45056 ай бұрын

  j' avais, mon enfant qui avait la spina bifîda melongosel sacé majeur

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  @user-dd7ru9rg8i6 ай бұрын

  Sir Can the hairs on the lower lumber region be removed parmanently for lifetime?

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  @jordantheslushie20706 ай бұрын

  Thank you for this <3

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  @jinp20086 ай бұрын

  disappointed that the conferences are gone, first conference I attended was in 2011? in Washington DC (Alexandria, VA) and I loved it because it was the only place I found people with Spina Bifida close to my age (40s), I attended the conferences several times. I went to different chapters and all I found were babies and teens, too young to make friends. I made lots of friends from all over the USA and Canada at the conference but over the years we lost touch. Currently I don't know any adults with Spina Bifida close to my age (58).

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  @KC-qi7gn6 ай бұрын

  U all will see me in November of this year 2024 HAPPY 50th BIRTHDAY 🎂 🥳 🎉 🎈 🎁 🎊 TO ALL OF MY SB WORRIOR'S N FAMILIES WORLDWIDE

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  @jodiweinstein8586 ай бұрын

  I think this was wonderful !

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  @SBAOrg6 ай бұрын

  Thanks for watching!

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  @Homeskillete746 ай бұрын

  Any information for men?

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  @SBAOrg6 ай бұрын

  This presentation is for anyone interested in advocacy.

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  @KC-qi7gn6 ай бұрын

  THIS IS MY FAVORITE (OUT OF 2) SPINA BIFIDA TALKS SO FAR CAUSE A FRIEND OF MINE (WHO ALSO HAS SPINA BIFIDA (THAT WAS NOT A FRIEND WITH AFTER BEING FRIEND'S ALL THROUGHOUT HIGH SCHOOL CAUSE OF THIS VERY THING (TOPIC) WERE BACK TO BE FRIEND'S AGAIN CAUSE SHE FINALLY UNDERSTANDS

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  @user-qu5zf5hj9g7 ай бұрын

  Hello dear doctor I am a patient of myelomeningocele spina bifida and have undergone surgery twice for lumbar abscess but I have erectile problem plz tell me what to do

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  @robadams57997 ай бұрын

  My challenge with having spina bifida as well as a shunt and diabetes AND a kidney transplant is that even though I'm only 54 years old, my memory is failing. Just when writing this question I had to check the date to remember how old I am. (It's December 25, 2023, by the way.)

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  @SBAOrg7 ай бұрын

  Hi Rob -- please write to us at [email protected]. We would like chat about your symptoms in case we can offer suggetions. Thank you for commenting!

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  @Homeskillete748 ай бұрын

  Hi Juanita

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  @AbdulKhan-zc5mx8 ай бұрын

  Hello my daughter is Spina bifida my daughter both legs no moment please help me

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  @bleonard18038 ай бұрын

  I’m so thankful for this information as an adult w/ SB. I find it increasingly difficult to find resources and medical experts that deal with us as adults. It has always seemed like once you turn 18 w/ SB you are on your own. It’s good to know that’s getting better.

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  @Homeskillete748 ай бұрын

  Thanks Mrs tebido. I very much appreciate this webinar.

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  @Justiceandintegrity9 ай бұрын

  Would love to know more about your association. My son has spina bifida

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  @SBAOrg9 ай бұрын

  Hi there - our website is www.spinabifidaassociation.org if you'd like to learn more about us! For specific questions feel free to reach out to our National Resource Center at [email protected].

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  @beautynbraingirlhack99098 ай бұрын

  My beby Spina bifida

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  @Homeskillete749 ай бұрын

  Abelisim is a control ingredient behavior. How can you control ablism

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  @malachidougherty83189 ай бұрын

  Hey my name is Malachi I’m a small town Artis I was born with spina bifida this video has helped me a lot I would love to sit down and talk to you guys.

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  @Homeskillete749 ай бұрын

  Are people with spina bifida allowed to participate in 5his con conversation?

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  @KC-qi7gn8 ай бұрын

  @wyattbrowning23 YES BUT THIS IS NOT LIVE SO IDKN/OR THINK THAT PEOPLE WILL SEE THIS BY PEOPLE I MEAN PEOPLE ON THIS VIDEO CAUSE THIS WAS A YEAR AGO

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  @amyellen38459 ай бұрын

  Thank you! ❤

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  @reg82979 ай бұрын

  I just got diagnosed with this is it anything to be concerned about

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  @Colonhealth411 ай бұрын

  Hi Judy