Category: sickle cell disease

This month we were joined by Birthday boy Shakir Cannon and engaged in a conversation about sharing your health journeys and information online.

Shakir is a sickle cell health activist who is making huge waves across the patient community. He represents patients at conferences (like ePharma Summit 2016), shares his journey through his social media channels and co-founded the Minority Coalition for Precision Medicine (MCPM) to which he’s taken his advocacy to the White House for the Precision Medicine Initiative.

Make sure to follow Shakir’s advocacy on his blog, his facebook and his twitter and read through this great discussion we had!


Make sure to join us for our next #HAChat on July 5th, 2016!


Julie Cerrone is the Patient Influencer Network Director at WEGO Health. Working with WEGO Health as a Patient Influencer prior to joining the WEGO Health team, Julie wakes up everyday motivated to help raise the patient voice. Follow Julie on Twitter, Facebook and on her personal blog.



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:


  • founded the 501 (c)3 non-profit organization SCD Soldier Network, Inc., with the mission to support and mobilize the sickle cell community through the establishment of a national registry of volunteers and trained sickle cell advocates
  • received the Sickle Cell Disease Association of America’s 2010 Mary H Hunter Patient Advocate Award
  • used video to share her story and insights and raise awareness about sickle cell disease through the SCD Soldier Network Channel on YouTube and the Sickle Cell Disease Channel on
  • co-authored Sickle Cell Disease 100 Years Later, an account of patients and families dealing with sickle cell disease
  • connected with the online sickle cell disease community through her blog, Twitter, and Facebook pages
  • was an inspiration to countless new Sickle Cell Disease Health Activists looking for a way to get involved


Read about Phyllis in her own words through her WEGO Health Spotlight Interview and through her video presence.   Did Phyllis touch your life? Share your experiences and thoughts here and send your thoughts to the Sickle Cell Disease community.


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!

First up is the fact that June is Men’s Health Month! This is a great opportunity for all health communities to zoom-in on how men are impacted by the condition or health focus in particular. It’s a good chance for us all to band together and encourage the men in our lives to be their healthiest and get involved in prevention, care, and best practices when it comes to daily health and more specific health conditions. Who are your favorite male Health Activists? Why not feature their work in your blog or community this month as a testament to the great work they are doing? As awesome Prostate Cancer Health Activist Darryl Mittledorf, LCSW, reminds us – this month it’s important that we keep in mind all of the men who are experiencing health concerns or conditions and may not be open and forthright with their experiences or have the support they need. Darryl says, “Gay men constitute approximately 7% of all cancer patients. And hardly more than 50% of all adult men are married. Men’s Health Month is a great time to remember that some men are facing health issues, isolated or alone, and can prosper with peer support.How will you incorporate men and men’s health issues into your community this month?

Later this month on the 19th is an important day not only here in the US but worldwide as World Sickle Cell Day draws near. Sickle Cell Disease is a condition that affects many around the world and your community may have more in common with the SCD community than you thought. Why not learn about SCD and share a bit about it with your community?  Health Activist and creator of Sickle Cell Warriors, Tosin Ola, tells us how important awareness is for those living with SCD, “This year the focus of Sickle Cell Warriors have been educating ourselves and then educating others. There are so many myths and misconceptions that surround sickle cell, and most of our discussions have revolved around debating and learning about these beliefs, where they come from, and if they are true or not.What does SCD have in common with your community and how will you share more about SCD on June 19th?

On June 27th is National HIV Testing Day. While amazing advances have been made in the HIV/AIDS community, testing is still incredibly important to benefiting from these advances. Raising awareness for this day is important. HIV Health Activist and Executive Director of Volunteer Positive, Carlton Rounds, stresses the very individual nature of living with HIV: “Everyone copes with living with HIV in different ways. How we feel about living with the virus, the circumstances of its transmission, the social stigma, the losses connected to the experience; physical, personal, economic, emotional, professional, psychological, spiritual, political, and intellectual varies greatly from person to person. Though we share a common experience, the way each of us processes it is unique.Will you discuss the importance of testing on the 27th?

And this Sunday, June 5th is National Cancer Survivor Daya “celebration of life.” Why not take the opportunity to reach out to those you know online (and offline) who are living with or have survived cancer and tell them how important they are to you? Remember their struggle and how difficult their journey has been and share in their powerful achievement with them. Ask a survivor how they would like to celebrate Sunday and join them! If you can, try to read and share articles from survivors that don’t sugar-coat (or pinkify) the experience of cancer but get to the heart of the cause and community. How will you discuss National Cancer Survivor Day and how could this day influence your own health community?

We hope you will join us in learning as much as you can about these conditions and the communities that work every day to raise awareness and improve the lives of their members. Supporting your fellow Health Activists is a great way to expand your reach and work together to do big things for the online health community in general. Tell us how you’re celebrating or commemorating this June and we will be sure to feature you and your work! Let us know what you’ve learned and how you’ve share with your community!

Click here to check out our 13 Ways to Get Involved This June and check out our full Press Release here

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.

A common theme between the SCD forums I visited and the SCD blogs that I checked out that day was the lightness. It seemed to me that the creators were hiding the dark, ugly side of sickle cell; and avoiding those difficult topics, which was what I longed to read about and connect with someone on. To fill the void that I couldn’t find, Sickle Cell Can Kiss my A$$ was born.

This is only the first part of Tosin’s interview. Click here to read Part 2!

Be sure to check out Tosin’s WEGO Health Profile and welcome her to the community!

Interested in learning more about Sickle Cell Disease? Join the WEGO Health Group.

phyllis 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?

There has been so many adults who suffer with SCD that feel as though they haven’t been properly represented or served in a way that is beneficial. My mission of offering that kind of support makes me hopeful, because I know that if the services are established they will be utilzed.

Read the entire interview on Marie’s Blog

Be sure to check out Phyllis’s WEGO Health Profile and welcome her to the community!

Interested in learning more about Sickle Cell Disease?

Already active in the online Sickle Cell Disease Community?

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

Please note: These groups will take one hour and are held remotely. Participants can join from anywhere in the country, but will required to be online and on the phone at the same time.

All participants will receive a $25 gift certificate.

We are looking for people who:

1) Have experience with Sickle Cell Disease
2) Stay current on news and treatment options for Sickle Cell Disease.
3) Are active contributors to online health communities.

Not sure if you’re an active contributor? We’re looking for people who participate in online discussion forums, question & answer sites, blogs, Twitter, etc.

If you are interested in joining us on Thursday, January 21st, the link below will take you to a short survey to see if the group might be appropriate for you:

Sickle Cell Disease Insight Group Survey