Saturday, May 22, 2010

The Waiting Game


Wishing the email would come & put me out of my wondering misery.

I am really glad there are people like Ellen Ullman,tireless advocates for the rights(and needs) of not just kids with diabetes,their families,and adults with diabetes.I've known Ellen since forever(through CWD for 10 years,& met her for the first time in 2005) she is just amazing.(both in person & online) She is an article guru, sent me an article,name & email info for this guy at Yale who is big in the world of Bartter's research,suggesting I inquire about DNA research.I didn't have anything to lose,it's not like the NIH has anything (that I can find)going on in terms of research into the disease.To hope that they might give me a $2000 genetics test (for free) is a hope I didn't want to let myself feel.(yeah,I'm good at getting freebies but not that good) The researcher promptly emailed me back with all these questions,namely to determine if it was just a pointless exercise,if it was Classic Bartter's you don't need a genetics test to confirm that. Then he wanted a boatload of medical records,which (because of vacation & school & doctor's offices being a typical PITA) took 1.2 months to acquire,sort,fax relative info to him.

Now I wait, and try not to be impatient.(but with every "ding" to my email inbox,it just intensifies the feeling)Perhaps they should just scrap the whole mess & name a disease after me so no one will have to scratch their heads any longer.I'm still afraid to hope for the genetics test(although if anyone could afford it to give 'em out,it would be Yale),but the input will (regardless) be invaluable to me,whatever he says.Cross fingers & toes. In the meantime,I it a week,a month,or a year.

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Anonymous said...

Oh good luck. And I agree. Ellen is awesome on many, many levels. I'm so glad she's on our side!

Scott K. Johnson said...

Crossing my fingers and toes for you too!