Emily's white blood cell count is finally normal, but we aren't weaning more steroids yet because her platelets went up (you know those tiny little guys that form scabs on you cut...or blood clots in your blood stream). It's ok because really the steroid amount is not much anymore and we've gotten used to the occasional mood swings.
Even though it seemed like bad news for me since I am desperate to get Emily off one of these medications I took it well because an email reminded me that there are 11 states where there are no pediatric rheumatologists and had we lived in one of those states with such a sudden and severe onset we would not be concerned about long term steroid use, we would be a family of three and not four.
So today I took some time to advocate for the children in those states.
I sent this email to my Senators and followed up with phone calls to each Senators D.C. office:
(It took me a total of 20 minutes.)
Good morning,
I’m contacting you today requesting the Senator’s support to fund the Pediatric Subspecialty Loan Repayment Program at the Health Resources and Services Administration with $5 million in Fiscal Year 2014.
Currently there are 300,000 children in America living with juvenile arthritis. Yet there are less than 250 board-certified, practicing pediatric rheumatologists to care for them. In eleven states, there isn’t a single board-certified, practicing pediatric rheumatologist! Had my family resided in one of these eleven states my daughter would have lost her battle with this disease before we even knew what it was.
In 2012 my then five year old daughter became suddenly and severely ill. Thanks to the fact that there was a pediatric rheumatologist in the area she received the diagnosis of a rare and potentially fatal form of Juvenile Arthritis known as Systemic Onset Juvenile Idiopathic Arthritis within two months of her onset. Even with this quick care she still required 57 days of hospitalization and monthly follow-up with a pediatric rheumatologist.
If funded, this program will incentivize more doctors into a field where there is a critical shortage.
These 300,000 children deserve proper medical care and easy access to it and even though the children cannot vote for you please remember they each have two parents of voting age. That is 600,000 votes!
Thank you for your time!
So, if you have 20 minutes today will you contact your Senator as well? Even with just an email. It could help save a life someday. You can find your Senator's contact information here (http://www.senate.gov/), just select your state from the drop down menu on the top right side of the page.
