Nursing diagnoses

There are several issues that occur in the body of a patient with tay sachs disease. Here are 4 nursing diagnoses that are the priority when caring for a patient with tay sachs:


https://www.google.com/search?q=nursing+diagnosis&espv=2&biw=1366&bih=667&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiZvuTk483LAhUQ_mMKHcDMCcUQ_AUIBygC#imgrc=JMQtENPYAMjbxM%3A


1. Ineffective breathing pattern RT minimal chest expansion secondary to decreased motor function AEB needing ventilator to breathe.

2. Altered nutrition: less than body requirements RT decreased oral intake secondary to impaired physical mobility AEB decreased weight

3. Activity intolerance RT decreased muscle tone secondary to tay sachs AEB being confined to wheelchair


https://www.google.com/search?q=tay+sachs+disease+support+groups+list&espv=2&biw=1366&bih=667&site=webhp&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjysZeM5M3LAhVG-GMKHXsADLUQ_AUIBigB#tbm=isch&q=tay+sachs+&imgrc=cpOXLBvcjfxynM%3A

4. Altered thought processes RT seizures secondary to tay sachs AEB loss of memory and difficult time speaking

Support groups

Here are a list of resources for support groups:

1. http://www.ntsad.org/index.php/find-support/late-onset
-This support group provides materials to better understand tay-sachs disease
-Explains symptom management
-Provides research updates
-Encourages how to cope with a loved one suffering from this disease

2. http://www.cats-foundation.org/family-support/
-This website offers family contact information to get in touch with families going through tay sachs as well. 
-This is to ensure that when a new patient is diagnosed, the family is not isolated and can get the resources they need to provide the best care to their loved one.


http://www.cats-foundation.org/family-support/

3. http://www.mdjunction.com/tay-sachs-disease
-This website is a forum to allow parents and family members to ask each other questions regarding tay sachs disease. 
-It is a community where family members, friends, and patients can support one another through the internet 
-Several people have posted on this forum asking for advice regarding care, symptoms, and how to help their child succeed as much as possible 


https://www.google.com/search?q=band+back+together&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiw_IfX3s3LAhVX5mMKHfU8DZQQ_AUIBygB&biw=1366&bih=667#tbm=isch&q=support&imgrc=siYdE6rsuM68FM%3A

4. http://www.bandbacktogether.com/terminal-illness-resources/
- This website provides support groups for family members of terminally ill patients.
- Having this resource to see coping mechanisms for parents is very helpful
- Since most tay sachs patients die within the first couple years, having other people experiencing the same is beneficial. 

App Resources

Here are some apps that can be of help when discovering your child has tay-sachs disease:

1. Racing Towards a Cure
    This app invites participants to run in a 5K race to raise money for a tay sachs cure. The name of the app includes an acronym that describes what the purpose of the app is. The Cure and Action for Tay Sachs foundation (CATS). This app allows people to participate in training for the race, provides health tips, and contact information for learning more about tay sachs. 
https://play.google.com/store/apps/details?id=com.app.p8934AJ&hl=en


https://www.google.com/search?q=the+cure+and+action+for+tay-sachs+foundation&espv=2&biw=1366&bih=667&source=lnms&tbm=isch&sa=X&ved=0ahUKEwj8-63d5b7LAhVT1mMKHRPtDnwQ_AUIBigB

2. Genetics & Birth Defects: Medical Dictionary and Terminology of Human Genetic Code and Evolution
    This app summarizes the various genetic disorders, including tay-sachs disease. This app gives information regarding the disease, and common symptoms that the patient will experience. The app can be a great tool to parents who want to learn more. 
https://itunes.apple.com/us/app/genetics-birth-defects-medical/id335520894?mt=8

https://www.google.com/search?q=dna+cartoon&espv=2&biw=1366&bih=667&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiXpKqR577LAhVE2mMKHcVXB1AQ_AUIBigB#imgrc=phCmQzWXrF-YmM%3A

3. Proloquo2Go
    This app assists communication with a disabled person. It is designed for autistic children, but can very helpful in children with tay sachs. It provides text to speech voices, symbols, large vocabulary, and is easy to navigate. If a child with tay sachs lives past two years of age, this app will allow that child to still have a way to communicate. 
http://www.friendshipcircle.org/blog/2011/02/07/7-assistive-communication-apps-in-the-ipad-app-store

https://www.google.com/search?q=proloquo2go&espv=2&biw=1366&bih=667&source=lnms&tbm=isch&sa=X&ved=0ahUKEwiW_J2L6b7LAhVCKGMKHUWKD0UQ_AUICCgD#imgrc=pWN3WuQ0sxaEGM%3A

4. Talkitt
   This app is made to help create communication in people with motor and speech disorders. The app translates unclear pronunciation into understandable speech. This allows the child with tay sachs to talk in their own voice and still be heard. The app recognizes the person's vocal patterns and uses it to translate into a coherent manner. This app also works in every language. 
http://www.goodnet.org/articles/7-best-apps-for-people-disabilities-list#

https://www.google.com/search?q=talkitt&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjbma_F6r7LAhUM4mMKHYNyBZgQ_AUICigE&biw=1366&bih=667#imgrc=QH1qNOdv6awliM%3A