June 18, 2011

#140 Conf: Social Media Gone Good

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 day "140 Characters Conference: Exploring the State of Now" June 15-16th in New York City!

All you had to do was express why you wished to attend the conference and then cross your fingers while sporadically checking your private messages for a response. (Yes! I actually behaved in such a manner; abated breath and all; no I didn't major in theatrics!) Guess who was one of the winning tweeters?

I've known fellow lupus sister Amanda Greene aka La Lupus Lady for over a year now and the concept of being able to wrap my arms around her in real life was almost too much for my brain to process! Besides attending the #140conf; Amanda was a speaker on the "Lupus Ladies of Twitter" panel along with lupus sisters Christine Miserandino aka BYDLS, Kelly Dawn aka KellyFund4Lupus, and her phenomenal mother Brenda Blackmon!

There aren't enough facial expressions to express my glee of finally being able to wrap my arms around these beautiful strong women. Each of us (excluding Ms. Brenda) has been living with the chronic illness lupus for quite some time and have found each other through the usage of social media.

These four remarkable women took the stage at #140conf and shared their stories. Christine stressed the importance of helping lupus patients in the state of NOW not later. Amanda showed us how anyone could easily help raise funds to promote lupus research with the new campaign from the Alliance for Lupus Research, and Brenda tugged at our hearts with her real-life story of how social media and prayer helped her daughter Kelly to wake from a lupus inflicted coma over two years ago. Fifteen minutes just didn't seem like enough time to be in the presence of such marvelous ladies.

There were memorable moments, inspiring speakers, and pearls of wisdom aplenty to be found at the #140conf.

From esteemed panelists like Deepak Chopra who shared a message of happiness and the importance of surrounding oneself with positive energy to young engaged Middle School Micro-interns which performed a skit that mimicked the effects of social media in the business world today! There were moms, CEO's, farmers, bloggers, teachers, dads, graffiti artists, police men, producers, etc all gathered together for a day of social goodness.

At the #140conf a police man (Scott Mills) shared his passion of crime stopping; working with kids and graffiti. Just a few hours later a lupus patient stripped on stage to raise funds for lupus research. We were taught the importance of returning relationships and practicing humility (Ted Rubin); and learned how to awaken our very own superhero from deep within (Christopher Penn).

I am beyond inspired; I am humbled by the opportunity granted. Thanks to Jeff Pulver I've discarded the dry and distant practice of handshakes and embracing the kindness and warmth that comes with a hug.

Social media grants us the opportunity to reach out and touch the world in each of its farthest corners. Now that you have that power; what will you do with it?

I have always endeavored to become a groundbreaking activist; I'm completely astonished that #140conf has set me on a clear path towards achieving my goal!

In case you missed the "Lupus Ladies of Twitter" segment from #140conf I've posted it below.

Feel free to leave your thoughts in a comment below; and share if you enjoyed the post!

June 9, 2011

Antiphospholipid Antibody Syndrome: Defined

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 that increases the risk that blood clots will form in the veins and arteries. Antiphospholipid Antibody Syndrome (APS) affects many more women than men. Sometimes nicknamed “sticky blood syndrome” in the United Kingdom, it can appear on its own but is often associated with systemic lupus erythematosus (SLE or Lupus) and other autoimmune conditions. People with APS have high levels of antiphospholipid antibodies in their blood.

 These antibodies—immune-system proteins—increase the tendency of blood to form into clots, which can lodge in the veins and arteries.
People with APS are at increased risk of a host of problems such as anemia, deep vein thrombosis (a blood clot that forms in a deep vein), heart disease, kidney disease, stroke, dementia, chronic headache, peripheral vascular disease, and pulmonary embolism (a life-threatening condition in which a blood clot travels to the lungs). In pregnant women, APS can lead to miscarriage, premature birth, and other pregnancy complications.
APS is diagnosed when an individual has a history of blood clots or of miscarriage and/or premature births and blood tests have shown the presence of antiphospholipid antibodies. The presence of the antibodies alone does not warrant a diagnosis of APS. Many people have antiphospholipid antibodies in their blood but do not have APS. As a side note, up to 40-50% of people with lupus, for example, test positive for the antibodies and may have both Lupus and APS

Treatment for APS is aimed at thinning the blood to reduce blood clotting. The standard treatments are anti-clotting drugs such as aspirin, warfarin (Coumadin), and heparin. As warfarin has been known to cause birth defects, doctors treat pregnant women with heparin. In addition, women with APS, especially those with a history of pregnancy complications, must be monitored very closely during pregnancy.
People with APS are also advised to stop smoking, exercise regularly, and eat a healthy diet to guard against other health conditions that add to the risk of developing blood clots, such as high blood pressure and diabetes. Individuals who have already developed these conditions must get treatment to control them.
Adapted from Arthritis Self-Management July/August 2009

Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is http://www.apsfa.org

-Tina Pohlman