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TiffanyAndLupus Patient Expert

New York, New York
I'm a luscious lavender lupus butterfly spreading my social media wings to promote Lupus Awareness. Diagnosed in January 2010 with Lupus SLE.  I advocate for lupus non-stop! Laughter is thee BEST medicine; and always remember you're never alone with lupus! Besides having my own... Full Bio
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Lupus & Theme Parks - Part 1: Walt Disney World by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Only FOUR days and counting til my wobbly legs land in Walt Disney World! YES, that magical land full of glamorous princesses, perfect princes, dastardly vi ... Read on »
Knowledge is Power: KSS2014 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus At the KIPP School Summit 2014 in Houston. I wish I could say that eighth grade was a magical time in my life, but the truth of the matter is that i ... Read on »
Down The Lupus Rabbit Hole! by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Photo Credit: Michelle Claessens It's been a long time since I picked up my writing pen, but here I am back at it again. So much has transpired sinc ... Read on »
The Patients Will Tweet You Now by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Let's bring our lupus voices together and chat! In honor of Lupus Awareness Month this month of May, WEGO Health is bringing together active ... Read on »
Change Your Perspective by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus How I Envision Lupus Warriors "Superpower Day. If you had a superpower – what would it be? How would you use it?" - Wego Health As fascinat ... Read on »
Health Time Capsule by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus "Health Time Capsule: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when ... Read on »
The Glory Days by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus It may be taboo for me to say change is hard to accept; but either way the cookie crumbles most can agree that it's usually Facebook that often tests our limits when it ... Read on »
It's My Lupiversary! by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus *croons softly* "Dooooooooo you know what todayyyyyy is? It's my Lupiversary! It's my Lupiversary!" These are the infectious words that I sung to myself this pa ... Read on »
Patient Advocacy in Motion: ePatCon 2011 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Today's  Wego Health  Blog Writer's prompt is: My TV Show "Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it ... Read on »
Dear 18-Year Old Me... by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Today's  Wego Health  Writer's prompt is: Dear 18-Year Old Me... "Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, wh ... Read on »
The Power of the Patient: e-Patient Connections Conference 2011: Day 1 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Photo Credit: iStockphoto "Patient is NOT a third-person word." - e-Patient Dave deBronkart These were the powerful words that r ... Read on »
Knowledge is Power: e-Patient Connections Conference 2011: Day2 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus As day two of the e-Patient Connections Conference 2011  (ePatCon) unraveled I found a familiar phrase constantly replaying itself in the background of my mind. "K ... Read on »
30 Things About My Invisible Illness You May Not Know by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus September 12th, 2011 hails "Invisible Illness Week" and I've taken some time to share 30 things about my particular invisible illness that several of you may not know. You c ... Read on »
Making Progress: The Digital Patient Bill of Rights by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Photo used with permission of Klick Pharma: ©2011,  http://klickpharma.com/ . All rights reserved. It's been exactly one ye ... Read on »
#140 Conf: Social Media Gone Good by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus While rambling on Twitter nine days ago I stumbled upon an intriguing tweet from Jeff Pulver mentioning his #140conf contest. The prize being free tickets to attend the two ... Read on »
Antiphospholipid Antibody Syndrome: Defined by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Today we welcome Guest Blogger Tina Pohlman; President, cofounder, and patient at the  APS Foundation of America .  Image from apsfa.org What is ... Read on »
Antiphospholipid Antibody Syndrome: Defined by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Today we welcome Guest Blogger Tina Pohlman; President, cofounder, and patient at the APS Foundation of America.  Image from apsfa.org What is APS? A disorder th ... Read on »
Revealing Lupus Lies (HAWMC)- Day 14 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Image from Fanpop.com It seems that there are a lot of "lupus lies" floating about the public/media these days. I'm going to take some time to r ... Read on »
Revealing Lupus Lies (HAWMC)- Day 14 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Image from Fanpop.com It seems that there are a lot of "lupus lies" floating about the public/media these days. I'm going to take some time to reveal some of the common ... Read on »
Healing Through Poetry & Art (HAWMC)- Day 19 by TiffanyAndLupus Patient Expert Posted in: Blog Posts in Lupus Today's post is a "free write", and I chose to share my experience from attending a monthly support group by The  S.L.E. Lupus Foundation  in New York City. ... Read on »