Archive for ‘sickle cell disease’

March 9th, 2012

Death of a Soldier: Honoring Sickle Cell Disease Health Activist Phyllis Zachery-Thomas

by Susan


Here at WEGO Health we spend a lot of time talking to people with serious health conditions and the natural consequence of that is that sometimes, we lose friends and partners along the way.  This morning we got an email from the Sickle Cell Disease community letting us know that a long-time member of WEGO Health, Phyllis Zachery-Thomas, had passed away.  Phyllis wasn’t just the founder of the SCD Soldier Network; she was a passionate, energetic, and warm friend who inspired all of us with her work and her dedication to her community.  She was also one of the Health Activists that we’ve had the good fortune to meet in person; when Phyllis drove from Atlanta to Boston to attend our Health Activist meet-up in 2010, she became part of WEGO Health’s family forever.  It’s a sad day when you lose someone, but WEGO Health is honored to have spent time with Phyllis and to have been witness to her work.  Today, we want to honor her dedication to Health Activism and what Phyllis has brought to the Health Activist community:

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June 2nd, 2011

4 Health Awareness Events to Share in June

by Amanda

June is here and with it comes a collection of health observances that you can learn about and share with your community. Even if your community’s awareness month, week, or day falls on another part of the year – we hope you’ll join the WEGO Health Community in highlighting these health communities and the Health Activists that lead them!

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January 11th, 2010

Spotlight: Tosin Ola, Sickle Cell Warrior

by admin

Spotlight On: Tosin Ola, aka the Sickle Cell Warrior
Active in the Sickle Cell Community since: June 2007
Occupation: I’m a registered nurse. There are 2 main reasons I became a nurse. The first was to pay it forward: all the help, support and care that I had received during my sickle cell crises’. The second was to counteract all the negativity that people with chronic pain deal with in the medical setting.

What do you do when you’re not raising awareness about SCD? Usually I’m doing this one way or another. When I’m not at work, on the phone talk to a sickle cell warrior, or online doing stuff related to sickle cell; I’m spending time with my fiancé, planning our wedding and researching grad schools.

How did you get started in the Sickle Cell Disease Community online?
I got into the sickle cell online community because I was looking for some information, encouragement and support for dealing with the condition. In the first week, I joined a few sickle cell forums online. However, I felt like a stranger and couldn’t really relate to the dichotomy with the cheery “all is well because of God’s grace” messages and the pitiful “my life sucks because I have sickle cell” messages. I scoured Google and Technorati for a sickle cell blog. I pretty much typed in “sickle cell blog” into the word search and came up with just a few results. The few that I found had just a couple of posts, as if the bloggers had good intentions but never really got into updating frequently.

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December 21st, 2009

Spotlight: Phyllis Zachery-Thomas

by admin
Spotlight: Phyllis Zachery-Thomas (you may know her as przthomas)
Website: AGASCA & SCD Soldiers
Twitter: @przthomas
Occupation: Retired accountant
Hobbies? Blogging

How did you get started in the Sickle Cell Disease Community online?

After starting my own personal facebook page, I decided to start a page for the Advocacy Group for Adults with Sickle Cell Anemia (AGASCA). I created AGASCA as an offline support group in my home town of Dallas after meeting several people who were in the hospital at the same time that I was. It wasn’t officially established as a non-profite, but that’s where I saw it going. After moving to Atlanta, I felt the Facebook page was a great way to stay in touch with the people in the original group, as well as a way to reach out to others all over the nation via the internet.

When you think of the future of the kind of work you’re doing with SCD Soldiers, what gives you a sense of hope?

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December 16th, 2009

Upcoming Insight Groups: Sickle Cell Disease Health Activists

by admin

We are holding online focus groups on Thursday, January 21st for people who are active contributors to online Sickle Cell Disease communities. These groups are being held on behalf of one of WEGO Health’s Sponsors.

Focus groups will be held at 12 Noon Eastern Time, 4pm ET, 6pm ET and 9pm ET on Thursday, January 21st

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