The story of Leza
First off my Great GM, GM, Mother , Aunt and Uncle all had it… However some choose not to be tested knowing the history. Living with not knowing… it created a take own fear … everytime you get sick you run to us it or isn’t it a sign I have it . At one point I just wanted answers for my bad health. But I had a daughter and a granddaughter my testing would now affect them as well.
It’s not like there’s a cure or even a treatment… just this happens that next is. My heath progressively worse my thoughts of my Grandmother strapped to a bed for 20 years terrified me. As long as I don’t know this can’t happen … well actually yes it can. And it will. At one point my excessive tumors demanded a DNA test… I held my breath. I ended up with NF 2 and heritage tumors both very rare… but no Huntington’s.
After the preparation for the results I was surprised I wasn’t relieved.  Now there were no explanation for my poor health but I was postive for 2 other rare untreatable diseases.  I can’t advise you to test … if there is no treatment or cure what does it do to you to know? I also can’t advise you not to test… knowledge is power. You before testing must ask yourself this true question: what changes … wether you show or dont  show positive results. And what if they find something else… how do you prepare for that?  I had no support system. Which made it very hard for me. Seek out groups, friends, your religious circle, family and get that established first. Even if you test negative there are so many emotions involved …Â
*Find others with NF2 on RareConnect, the online platform for people affected by rare diseases