Neurofibromatosis | exceptionallearners

Definition

( Picture Credit http://www.piedmontparent.com/PP/Living-with-Neurofibromatosis/ )

Neurofibromatosis is a genetic condition, that causes tumors to form in the brain, spinal cord, and nerves. The tumors are typically noncancerous. There is no cure for Neurofibromatosis. The condition is chronic and lasts the lifetime of the individual. No one case of Neurofibromatosis will be the same. The good news is that great strides have been made medically to manage the condition.

(Picture Credit: https://nfnortheast.org/nfchampions/ )

Neurofibromatosis, pronounced Neuro- fibroma-tosis, can also be referred to as von Recklinghausen disease, Watson disease but is most commonly called NF.

NF is somewhat common according to Florida Hospital, a leading NF specializing hospital, which reports that “Neurofibromatosis affects an estimated 100,000 people in the U.S., occurring in all ethnic groups. The statistics on NF also show that: Neurofibromatosis has a 50 percent chance of developing in a child who has one parent with the mutated gene. Type NF1 Neurofibromatosis affects one in 3,000-4,000 people in the U.S.”

https://www.floridahospital.com/neurofribromatosis-nf/statistics-neurofibromatosis-nf

There are 3 types of NF. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood.

NF1 (Type 1), is the most common and most frequently found in children, can cause bone deformities, learning disabilities, and high blood pressure.
NF2 (Type 2) can cause hearing loss, vision loss, and difficulty with balance.
(Type 3), is the rarest, and can cause chronic pain throughout the body.

Since NF1 affects children most often, we will be focusing on NF1 more intensely. Per the Mayo Clinic, signs and symptoms of NF1 include:

Light brown spots on the skin (cafe au lait spots) ***
Freckling in the armpits or groin area
Tiny bumps on the iris of your eye (Lisch nodules)
Soft bumps on or under the skin (neurofibromas)
Bone deformities
Tumor on the optic nerve (optic gliomas)

https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490

***Important to note though: Just because a person has one or two café au lait spots does not mean they will test positive for NF1, but if they have five or more about the size of a dime, additional medical tests should be explored with an NF specialist.

Although there is no cure, once diagnosed, it is important to be proactive with NF testing to help manage it. Other tests can help identify medical problems commonly associated with NF. MRI’s, which help screen for changes in the brain called "bright spots," brain enlargement, and tumors. X-rays may help identify skeletal problems.

Careful observation is the first key to managing NF1, and in some rarer cases, chemotherapy, radiation therapy, or surgery are considered as well.

Instructional Strategies

FACTORS TO KEEP IN MIND

Because tumors can grow on their nerves, some children may have other physical health problems that could limit the activities they can be involved with in schools (some examples are they may have a vision loss, epilepsy, or a problem with the backbone)

Some students with NF1 may have mild learning difficulties, issues with short-term memory, experience delayed speech, behavior difficulties, an increased incidence of attention disorders (ADD/ADHD) and some social communication challenges.

(Photo Credit: https://goo.gl/images/vA7Rkd )

AS EDUCATORS, WE CAN BE THE DIFFERENCE,

BY OFFERING MODIFICATIONS IN THE CLASSROOM!

For Memory Processing issues, break down information into smaller pieces. Provide notes beforehand or visual organizers so they don’t have to rely on their short-term memories as often.
For students with a short attention span, break assignments down into smaller spurts. Instead of doing 20 problems, offer 10.
Place student in preferred seating location in front of class to decrease distractions and help to increase attention and focus. Students with visual issues/ optic gliomas should also be placed in preferred seating to optimize their ability to see text on the board, etc.
Use nonverbal prompts (tapping a pencil on a desk for example) that you have agreed upon with the student, to help them refocus.
For students that are restless, offer additional movement breaks or fidgets, depending on need.
For students that need help remembering homework, provide a simple homework planner, and be sure to go over with it with them at the end of the day. If they need extra time for assignments, try to offer some extra time throughout the day with subtle reminders.
Offer steps to assignments in easy to handle pieces if students struggle with time management skills.
If having issues with language and speaking, teach others to be patient while they get their ideas out.
Limit use of timed tests so students can demonstrate true knowledge at their own pace.
Optic Gliomas (tumors on the eyes) can sometimes hamper the ability to read, similar to what children with dyslexia experience, so providing audio books can be very helpful for students with NF1.
Fill-in-the-blank tests and quizzes can help with memory recall and writing challenges.
Most importantly, teach others to accept them for who they are. They are people just like all of us, and just a person who just happens to have NF1. Their diagnosis doesn’t define them!

(Picture Credit: https://nfnortheast.org/nf-champions/ )

Useful Websites

Click this link for a handy worksheet for educators (quick read) with basic facts about NF1, questions teachers might have about student needs in the classroom, some sample case scenarios that students with NF1 might experience and how to adapt these strategies in the classroom: https://www.nfauk.org/assets/downloads/Neurofibromatosis_Type_1_Information_for_Teachers_v1.pdf
A very practical “at a glance” summary of Learning Difficulties that Affect some Students with NF1…I recommend downloading this one!:https://www.nfauk.org/assets/downloads/Summary_of_Learning_Difficulties_that_affect_some_children.pdf
This link provides additional information for educators, to help them understand students with NF1 needs in the classroom, including information about areas of learning, concentration, coordination, memory, speech, reading, writing, math, processing, sequencing, and behavior and where to get support in the school for all these areas https://www.nfauk.org/assets/downloads/Additional_Notes_for_Teachers_2013_v1.pdf
Check out this link for a hub of downloadable information from The Neuro Foundation resources for educators for almost any NF1 topic.: https://www.nfauk.org/resources/knowledge-hub/nf1-knowledge-hub/
More information about NF1, including diagnosis, treatment, and resources: https://www.ctf.org/understanding-nf/nf1
Information about NF1 for Educators in a printable PDF document with practical classroom applications: https://www.ctf.org/images/uploads/CTF-NF1_for_Educators_web-ready_(1).pdf
Photo of café-au-lait spots and more information about them: https://www.nfmidwest.org/blog/cafe-au-lait-spots-diagnosis-nf1/
A brochure for teens diagnosed with NF1: https://nfcenter.wustl.edu/wp-content/uploads/2010/10/SLC6906_NeurofibromatosisTeenBrochureR1.pdf

Scientific Research

These are numerous trials for NF1 ongoing right now, but these are relevant for students.

This is a Portal Registry study about individuals that have one of the 3 types of NF through the Children’ Tumor Foundation. People with NF can register for a National Database to share their experiences about NF responding via online questionnaires. Results will be updated, and it is an ongoing project. Information will be provided to researchers and can be a resource for patients. https://clinicaltrials.gov/ct2/show/NCT01885767?term=Neurofibromatosis+Type+1+%28NF1%29&recrs=abc

The National Cancer Institute and the National Institute of Health Clinical Center want to collect information about children, teens, and adults to track them every 6 months to every 3 years to evaluate how NF1 affects patients. Patients provide medical history, exams, and blood tests in addition to scans, and other medical tests to ascertain the disease effects on their quality of life. https://clinicaltrials.gov/ct2/show/NCT00924196?term=NCT00924196&rank=1

A study by Vanderbilt University is testing the impacts of the drug Lovastatin, reading tutoring intervention, a placebo, or other unnamed tutoring program, on students with NF1 to see if any of these factors influence the Learning Disability or Reading Disability for these students.They want to test differentials in outcomes to see which is most effective for the student. https://clinicaltrials.gov/ct2/show/NCT02964884?cond=NF+1
For information about additional Research Studies, check https://clinicaltrials.gov to search under NF1 Studies.

My Research and Other Resources

(MY RESEARCH/SOURCES FOR INFORMATION)

Neurofibromatosis. (2017, August 11). Retrieved October 22, 2018 from https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490

What other names do people use for neurofibromatosis type 1? (n.d.). Retrieved October 21, 2018 from https://www.nfmidwest.org/blog/ufaqs/names-people-use-neurofibromatosis-type-1/

Statistics of Neurofibromatosis (NF). (n.d.). Retrieved October 24, 2018 from

https://www.floridahospital.com/neurofribromatosis-nf/statistics-neurofibromatosis-nf

Living with Neurofibromatosis. (n.d.). Retrieved October 28,2018 from http://www.piedmontparent.com/PP/Living-with-Neurofibromatosis/

Neurofibromatosis type 1. (n.d.). Retrieved October 28, 2018 from https://rarediseases.info.nih.gov/diseases/7866/neurofibromatosis-type-1https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490

Gupta, R. C. (Ed.). (2015, October). Neurofibromatosis. Retrieved October 21, 2018 from https://kidshealth.org/en/parents/nf.html

OTHER RESOURCES

Click on this link to get more information about how to support families with NF through their yearly Walk for NF in Naperville. I have done this walk and it is a great way to support the families!

https://www.nfmidwest.org/event/great-steps-4nf-in-naperville-il/