Wednesday, September 26, 2012

NF in the News

I have mixed emotions about this news article.  There are tons of them on the web about this story, but here is a link to one.

Sperm Donor Passes Genetic Disease to Babies

This article says its 5 babies, other ones say 9.  But that isn't what matters.

Here's how I see it...

I'm glad that NF is in the news, but when they report about it could they get the facts right?  Lots of these articles don't list correct information about the disease or any information about it at all other than its name.  I just wish that just once when I see an article mentioning NF it had correct info, and a decent amount of it.  Listing 3 symptoms of the disease doesn't even come close to telling people what it is or what it can do.  Want to know what some of the symptoms and facts really are?  Check out this list on the CTF website.
NF Fact Sheet

I love how they call it rare.  Its not that rare people!  One out of every 3,000 people are born with it in this country.  And from the CTF website...
"(Neurofibromatosis) ...affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined." 
COMBINED!!!  Yet most people have heard of one or more of those diseases! 
And how was the sperm bank suppose to catch this?  My guess is the man probably didn't even know he had it until one of the children his sperm produced was diagnosed.  Testing for NF is not commonly practiced.  You have to ask specifically to have it, and even then its hard to get.  I've been trying to get tested almost since my daughter was diagnosed 4 years ago.  And between difficult insurance and doctors who don't know any thing about it, it has yet to happen.

I feel bad for these parents and children that have to go through this.  But like all of us living in the NF community, I hope they find the strength and support they need to muddle through something that is so misunderstood and difficult to treat.  I wish them the best, and hope that these children are some of the lucky ones who experience few, if any, symptoms.

1 comment:

  1. I recently blogged about Awareness and how so many big name 'diseases' have awareness walks. Well everyone is aware of what autism, downs, cerebral palsy, etc is. They should call their walks 'fundraising' walks.

    An awareness walk for NF would likely combine both. But mostly awareness.