Friday, January 30, 2015

How Do You Manage?

I was asked by a mother, who is dealing with a new diagnosis of NF for her young son, what a life with NF looks like...And how we manage the everyday symptoms.

This answer is different for every one and there is no simple answer.  I wish there was a handbook...Or set of rules to follow....Heck, I wish that there was AT LEAST an affective treatment.

While Neurofibromatosis itself is not fatal; the symptoms definitely cause life to have to adjust to be able to manage and cope.

With the wide range of complications and variety of ways NF manifests, its hard to predict - or even give advice to families dealing with NF.  All we can really do, is rally around each other.

I know in my own family, with four of us dealing with NF...I can see how wide spread the symptoms are.  For me, I went 33 yrs before being diagnosed, even though, my symptoms were "obvious".  For my children, vision problems. learning disabilities, and dizziness were widespread...And detected early.  Even saying that...The 3 who have NF, are so different, and I have to pay close attention to make sure we aren't missing something.

Here are some ways our family manages

*Take each day as it comes.  This is so much easier said than done, I know.  But seriously, this applies to ANYONE.  No one can control what tomorrow holds...So trying to control it is wasted effort.
It is scary to be diagnosed with NF.  The what-ifs can easily consume even the bravest of hearts....I know that I have spent a lot of time feeling angry and guilty about how having this disorder is unfair...And it IS UNFAIR!
But spending time obsessing over something I cannot control - is something I had to let go of.  And once I let go - It was a life-changing experience, where I learned how to accept what is, and figure out ways to make the bet of it.

*Once the diagnosis is confirmed....It doesn't mean that all your research about what NF holds is true for you.  I have met thousands of people with NF...Not ONE of them is the same.  I don't care how many degrees a doctor has on their wall...There is no way they can predict the future.

According to doctors, my brother, who has NF1 and is 44 years old, should be dead.  So never hold the STATISTICS of whatever it is you are dealing with very high.

I have learned to not take the doctors word as the final word.  They are human, just like me...

*We hold up HIGH our strengths!  Everyone has something they are good at...In our family, we try to make THOSE things our focus.

*Understand what you are dealing with...But DON'T get wrapped up in it.  We take an active part in having NF...But we don't allow it to stop us...Or keep us from doing what we enjoy.

Go through the coping process
*Anger (it's ok to feel this....Just don't stay there)
*Learn (understanding helps)
*Take control (DO something! Teach someone! Inspire someone!)



  1. Well said. Well shared. Well lived!

  2. YES! Thank You Kristi for your encouragement and delightful perspective! You give me hope.
    Hugs to you!

  3. As a mom of a 2 year old daughter with NF I really appreciated this post! Such wonderful insight! Thanks for sharing!