Care
The NUS1 Foundation is here to help you navigate the complex world of caring for a loved one with NUS1 Genetic Disorder. This page is updated regularly to continulously contribute new ideas and aids that help along your NUS1 journey.
Like threads in a tapestry, NUS1 caregivers weave a blanket of supports for their loved ones.
Artwork by Marianne Fairbanks
NUS1 Care + Monitoring
Ultra rare diseases require a web of care that is not yet configured. Our NUS1 families become invaluable trailblazers. Parents and caretakers are the only consistent lead for the ongoing advocacy and care.
Seizure Care
Seizure care and monitoring can be a large part of NUS1 support. Knowing your medication options and being informed on Seizure first aid is crucial. Epilepsy Medications vary tremendously. Exploring all the options is challenging. Knowing other NUS1 families have gone through this similar journey can be a great comfort.
Cognitive Support
There are a variety of cognitive supports NUS1 families have found to be successful for learning growth. Memory Strategies is one of these and is often an under recognized part of children's IEPs. NUS1 warriors benefit from flexible cognitive supports in and out of the classroom.
Social/Emotional
Supports
Parenting and Guardianship of children and adults with NUS1 mutations can be taxing. Having emotional and cognitive support for yourself and your NUS1 warrior is vital. The Child Mind Institute is an incredible resource for parenting. Sign up for their updates and receive speciality webinars and resources.
Community Ideas + Supports
While we figure out more longterm solutions and treatments for NUS1, NUS1 and DHDDS families have been the best resource for ideas and strategies for supporting our loved ones. Parents have suggested and discussed some of the following on our community pages.
* links in all of the support ideas below
+Muscle building needed for strengthening
+High protein diet needed for increased stamina
+Memory retention strategies add to Individualized Education Plans (IEP)
+Individualized Education Plan (IEP) for Speech/Language/OT
+Autism spectrum + ADHD supports for learning strategies and behavior
+Behavior Cognitive Therapy /Play based or other Therapies for emotional regulation
+Cognitive Psych Evals for determining individualized plan for learning support
+Educational Therapy for parents to help communication and educationa
Getting an EEG Soon?
An EEG (electroencephalogram) is one of the main diagnostic tests for epilepsy and a vital part of epilepsy management.
There are many types of EEG's including routine, ambulatory and video.
When in doubt, get up to speed with these resources describing the process.
Alternative Therapies
Have you tried Equine therapy or Osteopathy?
Building confidence and strength come in all forms and some caregivers have had tremendous success with these alternative forms of therapy.
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We would love to know what is working
for you as we shape NUS1 Care
Join our Parent Mingle or
Listen Up.
Whichever platform you choose, listening to podcasts can give you insight into our ultra-rare communities. Hearing the stories and voices of others and knowledge from medical specialists can help us feel less alone, and provide tools and ideas for how we manage our loved ones care.
Whether you are out on a walk, driving in your car, or completing chores at home you can sink into some incredible support.
