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  #11  
Old 07-07-2014, 08:42 PM
elmarianexx elmarianexx is offline
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Treatment

Although many children's hospitals feature integrated multidisciplinary teams to coordinate healthcare of youth with spina bifida, the transition to adult healthcare can be difficult because the above healthcare professionals operate independently of each other, requiring separate appointments and communicate among each other much less frequently. Healthcare professionals working with adults may also be less knowledgeable about spina bifida because it is considered a childhood chronic health condition. Due to the potential difficulties of the transition, adolescents with spina bifida and their families are encouraged to begin to prepare for the transition around ages 14–16, although this may vary depending on the adolescent's cognitive and physical abilities and available family support. The transition itself should be gradual and flexible. The adolescent's multidisciplinary treatment team may aid in the process by preparing comprehensive, up-to-date documents detailing the adolescent's medical care, including information about medications, surgery, therapies, and recommendations. A transition plan and aid in identifying adult healthcare professionals are also helpful to include in the transition process.

Further complicating the transition process is the tendency for youths with spina bifida to be delayed in the development of autonomy,with boys particularly at risk for slower development of independence.An increased dependence on others (in particular family members) may interfere with the adolescent's self-management of health-related tasks, such as catheterization, bowel management, and taking medications. As part of the transition process, it is beneficial to begin discussions at an early age about educational and vocational goals, independent living, and community involvement.

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Last edited by elmarianexx; 07-07-2014 at 08:43 PM. Reason: grammar
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  #12  
Old 07-14-2014, 04:38 AM
Profit5500 Profit5500 is offline
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Quote:
Originally Posted by Jaci View Post
I am a 34 year old female and today I was told that I have Spina Bifia.* I have heard of this but virtually know nothing about it.* Is there any websites or resources that many of you have referred to in order to help you understand how this happens? <br/><br/>
I think that you did not have a lot of folic acid in your diet. I think that could have been the problem there. I do not know your current diet or any physical activities that you do, but I hope you get better.
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  #13  
Old 07-22-2014, 10:22 PM
firelily99 firelily99 is offline
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I was unaware that SB could be diagnosed in adulthood, very surprising to hear this. Mayo Clinic is a fountain of information about many conditions, I know that I have gotten a lot of good facts from them.
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  #14  
Old 07-22-2014, 10:33 PM
firelily99 firelily99 is offline
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What are the percentages of an adult being diagnosed with SB? If there are out ward physical signs it seems to me that someone might have questioned them?
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