Deuteronomy 31: 6
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
February 29th is rare disease day. Makes sense since February 29 only comes around every four years. I thought I’d share a bit about my rare disease, Neurofibromatosis Type 2. It’s caused by a mutation on chromosome 22. Because of the mutation, tumors can grow anywhere a nerve is. But most people with NF2 have bilateral brain tumors called Acoustic Neuromas or schwannommas.
NF2 occurs in about 1 in 25,000 individuals so that makes it extremely rare. I was diagnosed in 2012 so I’ve been living with it for more than a decade. In the beginning, I never thought I’d make peace with it, but I have. It’s just a part of who I am now, but it’s not been an easy journey.
The symptoms come from the tumors themselves. My two main tumors (troublemakers) are the bilateral brain tumors. And that’s where all my problems come from. I have several other tumors on my arms, hands, and foot, but they don’t really cause any issues.
Unfortunately, one of the big unknowns with NF2 is that a new tumor can develop at any time anywhere. And start wreaking havoc once again.
Some of the things I do/have experienced: deaf in one ear and a severe hearing loss in the other; extreme balance issues (I use a cane now but had to use a walker for a time); tinnitus 24/7; neuropathy in my feet, legs and hands (much improved; debilitating chronic fatigue (finally improving); stage 3 kidney disease (much improved); and wonky head and mental confusion (much improved–even though my husband might disagree!).
Being a writer, my writing changed as life changed. I wrote a series (PUZZLE HOUSE) in which one of the main characters also had NF2.
In spite of the many difficulties, God has been with me throughout my journey. He’s never forsaken me. He’s given me amazing supernatural peace just as he promised. I know it’s hard to believe but I rarely get upset, frustrated or worried.
Of course, that doesn’t mean if something major happens again, meaning another serious tumor, I won’t have some difficult times. But what I’ve learned on this journey is that God is faithful. God is trustworthy. God will not forsake me.
YOUR TURN: SHARE THE STORY OF YOUR RARE DISEASE THAT AFFECTED YOU OR A LOVED ONE.
GOD BLESS & GOOD READING.
Tiaras & Tennis Shoes 