Sunday, April 06, 2014

2014 Cocci Study Group - Phoenix AZ

The 2014 Cocci Study Group met in Phoenix AZ this year at the University of Arizona College of Medicine. Being in a cocci-prone region, Denise did not get to go and rub elbows with the superstar researchers that from afar have been keeping tabs on her case. So my uncle, aunt (the nurse that explains the medical jargon) and I drove out, holding our breath so as to not inhale spores.

As we've become used to hearing, there are not enough people that have the disease for the government nor pharmaceutical companies to throw any resources into it, the debate still goes on about whether it's better find a vaccine first or a cure for active cases first, and that the most promising prospects for either are stalled due to lack of funding. On the positive side, more publications around the country (not just in cocci-endemic regions) have been featuring articles about Valley Fever, so the awareness is being raised. 

The most interesting things we heard came from a representative from NIH (National Institute of Health) that suggest there may be a genetic predisposition to acquiring cocci. It meshed with another researcher's presentation about using Spherusol (a cocci skin test antigen) to start looking into which members in families have cocci. After the presentation we approached the presenters to get more info. Upon hearing the circumstances & extremity of Denise's case (and survival), they were both interested in following up. So Denise, I, and the kids might participate in future studies.

How's Denise doing? Well, the voriconazole still damages her liver & skin, so she's had several pre-cancerous spots removed from her (this frustrates her since she's basted in sunscreen and covered up almost head to toe). The extreme fatigue still persists, 9 years after falling ill. We've been wrangling with insurance for a LONG time to try to get her a surgery to hopefully correct damage related the multiple feeding tubes, abscesses, diastasis (from extreme swelling during the worst of her infection), digestive failures, etc. And sometimes we have funny misunderstandings resulting from impaired hearing & vision... at least I think they're funny. A while ago I found a bud vase she was looking for. She thought I told her that she had a butt face. That'll teach me to try talking to her when she doesn't have her hearing aids in.


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