File this one under the category of "Wow, I can't believe it!".
Last Wednesday (September 19, 2012), via Twitter, I learned that a person I'd never met personally yet felt a shared mission with, passed away at age 55. That person was a woman named Jennifer C. Jaff.
Yet in a video that's available online, Jennifer summed the situation up in pretty blunt yet accurate terms. Chronic diseases of all types usually end up one of two ways: either the disease goes away (into remission) or it ultimately kills you. Have a look at the video below, or by visiting http://vimeo.com/10074776:
In the diabetes community, we like to believe that if we just follow the rules of diabetes treatment, we are guaranteed a life free of diabetic complications. Not only do we want to believe that; we have been taught to believe that, but the reality is that great glycemic "control" offers NO guarantees, it merely improves our odds of avoiding some of the so-called diabetes complications.
No doubt, some of Ms. Jaff's gastroenterologists told her similar things about Crohn's Disease, but last week, she passed away suddenly from complications of Crohn's Disease. Now, before I get too far off track, there's a part of the story, unless you followed her on social media, you might not be aware of. In 2005, Jennifer was forced to leave her law practice job with a law firm because she needed to be able to dash off to a restroom suddenly thanks to Crohn's Disease. I think we can conclude that really sucked.
But instead of treating that as a devastating loss, she found new vitality in the online community. She started a nonprofit organization that's known as Advocacy for Patients With Chronic Diseases, Inc. [http://advocacyforpatients.org/] (on Twitter, the organization's handle is @Adv4Pats) and on Facebook, it can be found at http://www.facebook.com/advocacyforpatients. She blogged at http://advocacyforpatients.blogspot.com/ and her nonprofit organization drew a large following from around the country. In particular, she had very strong opinions on the Patient Protection and Affordable Care Act, with the belief that that legislation was a civil rights issue for people with chronic illnesses. In an interview with the Hartford Courant, she said "I live and breathe chronic-illness law, and in my estimation this is the most important civil rights advance for people with chronic illnesses ever. There can never be equality if we can't get health insurance."
The pretty much echos my sentiments on that issue, too!
I can remember reading her Monday morning blog posts and reading in amazement at her legal opinions and the excellent sources she cited for her opinions. While I often postponed reading her Monday posts due to the in-depth nature of them, when I had time to read them, the insights were truly amazing. Her organization also offered recommendations on insurance denials, which Jennifer believed was a business practice to, she argued, the providers do all they can to minimize coverage of chronic illness.
In the blog post (see HERE) announcing her death, the organization's President Carol Fain Walters wrote that any funeral arrangements would be private, but noted that the organization is planning a memorial gathering for Jennifer sometime in the next few months and they will be announcing the date, time and place once those details are finalized. For people who care to donate gifts in her memory, they ask that those be sent through their website, or by mail to: Advocacy for Patients with Chronic Illness, Inc., 195 Farmington Avenue, Suite 306, Farmington, CT 06032.
I will just close with the memorable obituaries that were published for her in both the Hartford Courant (http://cour.at/PEAevz) and The New York Times (http://nyti.ms/Sic2Bu).
While Jennifer's shoes will be tough to fill, I think her contribution to all people with invisible, chronic illnesses has been tremendous and extends to those of us in the diabetes online community. Her goal was to help people with chronic diseases when others wouldn't.
Just to end this depressing post on a slightly happier note, Jennifer found a strong voice with Mike McCready of Pearl Jam, who also lives with Crohn's Disease. Catch the two of them at a 2010 Pearl Jam concert in Hartford, Connecticut below, or by visiting http://youtu.be/aORsrlWaf5c: