Wanda's Story:

I am a 52 yr. old female diagnosed with nf 2 in 1984 by a specialist in Orlando Fl.  I don't remember his name.  He was a catastrophic disease doctor, listed as such in the yellow pages.  I have suffered with uncontrolled seizures most of my life,  diagnosed at Cleveland Clinic in 1969.  I have been blessed with a strong constitution and a deep belief that I am protected by my own special angel.  How else to explain the literally hundreds of emergency room visits during a period of years that I worked tirelessly as a waitress.  Of course,  I lied on my applications but each employer was o.k. with it because I am a hard worker, honest, and I like to at least make the job tolerable with a joke or two.  I like to laugh.  I am thankful for the joy of seeing my loved ones smile or laugh with me.  I am digressing here only because I guess I have not given any thought to what I need to ask or tell.  Never to be shy,  I looked up nf in the research book at the  main library in Orlando , after getting out of the hospital with this diagnosis 

----  let us go back to see if I can give you some idea of the events leading up to that fateful day.....

As long as I can stay fairly healthy and keep stress down , eat right, get enough rest I don't have as many seizures-  Sure !!!  low income,  no benefits,  getting meds. through special program with Epilepsy Foundation.  Finally getting insurance,  see a gyn. dr. I have lumps running in a chain down  my left groin.  Some are sensitive and increasing in numbers over last several months.  I had a 
hysterectomy in 1973 - for uterine cancer- so really did need a pap/checkup anyway.  Also had a huge calcium deposit on top of left foot removed when the nodes were removed.  That afternoon a dr. came to my room, ask if I had cafe-au-lait spots.  I said yes- several, showed them to him- he asked a couple of things,  then said Yes that is nf for sure, and that he had only seen one other case come under his microscope - he started to leave and I called him back - Wait what are you talking about ?  He said ask your dr. I am  the hospital pathologist who examined the nodes .  So I  asked my gyn dr. - he said  I don't have any idea what that is  I will send a neurologist-  he came in looked at my chart asked a few questions-- then proceeded to tell me he didn't really deal with this type of disorder,  I should discuss this with my dr. and left.

I am getting tired so I will save you the agony of the details of  the rest of my medical saga- which it truly has been a learning experience in oh so many ways -  medicine today has no heart and from experience I would have to say not much common sense or courtesy.    For awhile I was receiving  
newsletters from NF Society-  but not for several months now.  Please send me any info that might steer me to a dr. who would know what nf is and any treatments available.  I have what I am sure is so many growing but not attached to any vital organs .  I am still active, my seizures are under control with new med.     

Thanks for being there,  please forward asap.

Wanda Bryant
48 South Walnut Street 
Akron,  Ohio   44303 

E-Mail: McPobry@aol.com