Tag: Roundtable

Roundtable Recap: Diabetes Awareness Month

Today is World Diabetes Day! So we wanted to share this recap of last Friday’s Roundtable with awesome Health Activists in the Diabetes Online Community (DOC). How are you raising awareness this month? –Amanda

Roundtable Recap: Diabetes Awareness Month

by Marissa

In honor of Diabetes Awareness Month, WEGO Health decided to highlight (and learn) about the disease that may seem a little taboo to those who are not directly affected by Type 1 or Type 2 Diabetes. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In Friday’s roundtable we focused on Diabetes. We found several amazing men and women who are also trying to spread the word about Diabetes, Jen (@BlueHeelSociety), Tarra (@msfirecracker22), Mark-John (@markjohn1 ), Sara (@saraknic), Tony (@type1rider), and Gloria (@GloriaLoring). These six incredible people shared their stories and their helpful advice about managing the disease, advocating for yourself, and facts about Diabetes.



Jen –



Tarra –



Mark-John –












We all start have start somewhere! How did you get involved in advocating for Diabetes?


Jen: I first got involved in 2005 when my 4 year old was diagnosed. Together we’ve done a lot for Diabetes like visiting congressmen. Then my older daughter was diagnosed recently, so now we’re getting her involved. When she was diagnosed going into college she could not feel lonelier. And although there is a great online community she wants real people to hang out with so I’m trying to put her in touch with people as best I can.


Mark: I was 54 years old when I was diagnosed with Type 1 ½ which I have never heard of. I was hypoglycemic; my wife found me in the office chair looking like a zombie and rushed me to the hospital. Then I got the diagnosis and looked for the answers on the internet and noticed there was a void. There were so many great people online but no one in the neighborhood. That’s what Diabetes needs, an outward program where people need to be proud of it and reach out. So we started organizations that built communities on the outside. I’m trying to make people come out of the woodwork and not be afraid to go outside and scream “I have Diabetes!”
Tony: I kind of fell into being a Health Activist. I was motivated by speakers at the Diabetes Exercise Sports Association conference to post about being the first diabetic to compete in a 24 hour solo mountain bike race. Then I started to get e mails from other athletes who have Type 1 all around the world. We promote awareness and encourage people with Type 1 and Type 2 to not feel discouraged by the disease at all.

Gloria: I became an activist in Diabetes community because my 4 ½ year old son got diagnosed in 1979. I am a singer and an actress and I started Days of Our Lives Celebrity Cookbook that raised over 1 million for Diabetes. I’ve written six books benefitting those with Diabetes.


Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey.  Social media has become a huge tool in connecting with others in your community.


How has social media and the Diabetes online community (DOC) changed your personal health journey?
Tarra: It has actually been very valuable. I recently ran into major issues with the Insulin pumps and someone read my blog and shared it and I had 30 or 40 comments in a couple of days telling me what to try. My doctor or the pump company didn’t know what was wrong and then I found out I had an allergy. I would not have found that out for quite a while if it wasn’t for the online community. You guys were more helpful than my doctor and the company. Everyone I’ve met has been so kind and so sweet.
Mark: I had a hard time because I didn’t know when I was going to drop. I would go on a job and just pass out. It’s a scary feeling. The DOC listened when I complained. Even if it wasn’t diabetes related, they all stood by me and said “you’ll get through it.” If it wasn’t for them coming through and giving support I would not have gotten though my tough times.
Sara: Before I found the Diabetes online community I would go to my endocrinologist and I didn’t make any changes on my own, I would wait for him to tell me what to do. Then I found the Diabetes community and it turned into my doctor asking me what I wanted to talk about. It changed it to something where my doctor is guiding my health to something that is personal and I am controlling my disease and treatment. I gained knowledge.
Tony: Last year I was at a race and I was put in a life or death situation. The encouragement from DOC got me to continue to ride after that. DOC keeps the spirit up of those with Diabetes every day. If someone is down there are 100 people that are willing to pick them up. It is in my experience that Diabetes is not a black and white disease. We all know you can eat the same exact food everyday and have different blood sugar ranges. And that’s one of the hardest things to grasp because patients often look for the answer and there is no answer it’s just kind of dealing with Diabetes on a daily basis, and that’s okay.


Gloria: As parents you’ve got to have someone who is a few years older than you that have a child approximately your child’s age that can help you through it. I give kudos to all of your who have found connections and provide connections to others through blogs and social media. There is so much value talking with people that have a lot of knowledge, it is just essential.


In honor of Diabetes Awareness Month there have been a lot of new and exciting programs being created. What are some of the programs you’re most excited about?


Jen: For World Diabetes Day we are trying to get monuments to light up blue! Niagara Falls will be blue and we are trying to get the Empire State Building to light up blue. The Blue Heels Society is starting an initiative to wear blue shoes (any shoes, not just heels, men!) and to talk about Diabetes while wearing their blue shoes.


Sara: I know you mentioned the Big Blue Test and that is a big thing to focus on because we only have a week left and are just a little over halfway to the goal. The Big Blue Test is that you exercise 14 minutes a day, and if you do it you donate $5 to an organization. It’s a Diabetes awareness initiative that people with or without Diabetes can participate in. One organization is in Haiti where I’ve been and I asked a hospital if they treat people with Type 1 Diabetes and they said they don’t treat Type 1 because they aren’t living long enough. So if exercising 14 minutes a week can save a life then people should do it.
When it comes to Diabetes, I think most can agree that there can be a thing or two done to raise awareness. How can other Health Activists raise awareness and education about Diabetes?


Tony: Well I think the main problem is there are too many groups working in too many different directions. We are very lucky we have a lot of different groups but I would love to see those groups come together. And we don’t really have a face, we would love one face for people to see and recognize, someone to work over a long period of time so when people see them they automatically think of Diabetes. We don’t have one solitary voice.
Mark: One of the things we try and push through the organization is, socially we are all diabetic but medically we are all different. I don’t care if you’re Type1 or Type 30—we’re all in this together. I promote “Type D”’. If you look at Livestrong the one thing I can say about that community is that it doesn’t matter what type of cancer you have, you all have cancer. All they care about is “how can we make your life better?” They care, the whole community cares.
Sara: I think you are dancing around the issue I keep dismissing. I believe we are one of the only diseases that fight amongst itself. What is missing from Diabetes awareness is Diabetes awareness.



Treatment Diaries Roundtable Recap

A few weeks ago we had the honor of co-hosting a panel discussion alongside Amy of Treatment Diaries. The discussion centered on the patient experience and how social media and online resources are helping change patients and caregivers’ lives for the better. It was an awesome chat that happened during the panel and on Twitter – and we hope to do more of these in the future! Thanks to Treatment Diaries for hosting and sharing this recap with us:

Roundtable Recap: Ovarian Cancer

We had an incredible Roundtable last Friday in honor of Ovarian Cancer Awareness Month. While other cancers seem to get the spotlight – the symptoms of ovarian cancer are often mistaken for other things and misdiagnosis is common. As a woman I found the information absolutely invaluable. I’m so glad we got to know these three Health Activists – they are doing amazing things for the Ovarian Cancer and women’s health communities.  –Amanda


Roundtable Recap: Ovarian Cancer

by Marissa Herman


WEGO Health likes to highlight (and learn) about health conditions that aren’t necessarily as well known as others. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In last Friday’s roundtable we focused on Ovarian Cancer. We found three lovely women who are also trying to spread the word about Ovarian cancer, Carolyn(@karenecpaceocf), Connie (@conniescheel), and Denise (@servivorgirl). These three amazing women shared their stories and their helpful advice about early detection, advocating for yourself, and facts about Ovarian Cancer.


Denise –




Carolyn –


Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey.  Social media has become a huge tool in connecting with others in your community.

How has social media and the online community changed your personal health journey?


Carolyn: By just making me wiser. I found out about the CA 125 blood test online. Going online has helped me be wiser about the things I need to watch out for.

Connie: I thought it was important that other people knew that at 32 you can be diagnosed with Ovarian Cancer and here’s what it’s like to go through it. I wanted to teach people this is how you cope with it and it isn’t a death sentence. Social media has just been the link to the world. I mean that’s the loudest voice available to us right now. Facebook, twitter, with social media you can reach a lot of people and through them it starts a chain reaction.

Denise: For me, I started it originally because I needed someone to talk to, I know that sounds kind of strange. I started seeing, because I became a member of Facebook and Twitter, I started getting more and more support. I started seeing that this is a really valuable resource to reach other women, and men, people and health care providers to maybe hear my story. Maybe it will change even one doctor, yes one medical provider learn a little bit more, pay a little more attention, anything to reach more people in his or her office, anything to reach more people so it is incredibly valuable.

Unfortunately, behind every lesser known illness there are bound to  be myths and misconceptions.

Carolyn : One of the main myths is that there is a certain age that get Ovarian Cancer and that is certainly not true. Like a lot of older people get it or mostly people that get Ovarian Cancer who have never had children, which is a myth.

Connie: A myth that touched me very personally was your weight. I think there’s a misconception that if you’re healthy and eat well and you’re thin, then you are immune to ovarian cancer, or all cancer.  And that’s not true. Just like if you drink and smoke and do all those things that you will get cancer. There are no guarantees either way.  I also think women more than men have been trained to just go with whatever your doctors say. You have to be your own best advocate, you have to be your own loudest voice because no one will fight for you like you will.

Denise: I would definitely have to agree about the age and health for sure, because I was told I was too young to have ovarian cancer 3 times. I don’t think we have enough about ovarian cancer to say what is and what’s not true about ovarian cancer. When it comes to ovarian cancer there is just so much we don’t know, the best thing we can do is know our bodies and listen to our bodies and read about it.


Not many people know about Ovarian Cancer.  What would you like to share with other Health Activists about it?

Carolyn: It’s affecting more and more women now. I have never heard of Ovarian Cancer when my sister was diagnosed. And how many women are like me? There are a lot of people that have no idea about Ovarian Cancer.

Connie: I think the most important thing is that ovarian cancer looks so much like so many other disease and I think people aren’t recognizing it as Ovarian Cancer. And we don’t want to scare people, but we want to encourage women to go to the doctor and rule out that they Ovarian Cancer. It may or may not be but people should rule it out as soon as possible.

Denise: Join other kinds of forums because one of the things is that our circle is very passionate about ovarian cancer because of how it sneaks up on us. I think that if Activists reach out in other communities and become a part of the group they can learn about Ovarian Cancer in that way. And I would encourage people to share each other’s organizations, promote each other, that’s important.
Ways other Health Activists help the Ovarian Cancer community

Carolyn: Use the internet. There are a lot of people out there, a lot of organizations including the one’s we are part of that are trying to be an advocate for Ovarian Cancer. So, definitely use the internet and volunteer. There are a number of organizations all around, Washington, Florida, Tennessee, that they can be a part of. Put the word out there, they should know the symptoms of Ovarian Cancers.

Connie: I agree with Carolyn, getting online, going to your local support groups and cancer centers and asking “what can I do?” There’s a great opportunity if you have Facebook, Twitter, to just start posting things and sharing things from websites. There is tons of great information available that we need to get circulating on an individual level.

Denise: Definitely reaching out on the internet and just searching for national and local organizations. I also like to reach out personally with the local organizations the one on one. Find your comfort zone; there are many ways you can help, many, many ways.

Programs, tools, information, or resources would you like to see created especially for those dealing with Ovarian Cancer

Carolyn:  I am not a survivor but I am a caregiver. There was nothing for caregivers of Ovarian Cancer. If there was more for the caregivers and tools for the caregivers, that would be helpful.  Something that could show this is what you do for this and this is what you can do for that.

Connie:  I agree, more support for the caregivers. I think, in a way, Ovarian Cancer patients and caregivers feel a little ostracized. I would like to see a change. An app to help organize your notes from your doctor and prescriptions would be nice. The biggest thing for me is a way to get complementary therapies to people. It should be more known for woman that there are other ways to heal and to cope.

Denise: I would like to re-emphasize that feeling of being ostracized. I needed resources, I needed help, I needed all sorts of things because my life was turned upside down. An education series, a video series of basic gynecological health to talk about what if it’s Ovarian Cancer and what are questions to ask when you get your surgery.  Such a simple, basic thing, but on a video you see a face, you see a real person talking about it. It would be easier to absorb it because it’s so scary.

What tips or advice do you have for someone who is just getting started in advocating and has decided to write a blog about their own fitness or healthy living journey?

Carolyn:  Know their bodies and know if something different is going on in their bodies.

Connie: Listen to your bodies, pay attention to yourself, value yourself, value your health, and find your peace.

Denise: To learn more about your family history and maybe keep a journal about how your cycles are an things like that. I think we’re taught to dismiss stuff, so maybe keep a journal of unusual things.

I would like to thank Carolyn, Connie, and Denise for talking with us. It was really interesting to learn all of the stigmas and gain new knowledge about this growing illness. They each shared valuable insight and great tips. Even though they each have a different story, they all share the need to spread the word about Ovarian Cancer.




Roundtable Podcast: Journey to Diagnosis

In the spirit of Invisible Illness Awareness, WEGO Health partnered with Christine Miserandino of But You Don’t Look Sick to host a series of Roundtables with Health Activists. In the first installment, Christine discusses “The Journey to Diagnosis” with leaders in the online health community: Amy Una Vita BellaRhiann of My Brain Lesion and MeAndrea of The Great Bowl Movement, and Michele of Your Life After Trauma.

The conversation ranges from why each leader got involved with online community, how to deal with mental illness, the struggles of being undiagnosed, what it means to be a “spoonie,” and tips for other patients who may be coming to terms with symptoms or new diagnosis.


This is our first attempt at publishing one of our Roundtables – as this is something we’ve wanted to do since our Health Activist Roundtable Program began.



Listen to part 1 (with an intro by our own Caitlin):

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Part 2:

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Thanks so much to Christine for hosting and thanks to our wonderful panelists: Amy, Rhiann, Andrea, and Michele for joining us.



Recapping Invisible Illness Week

You may have noticed that we did something a little different during last week’s #HAChat. #HAChat and #HARoundtable have combined forces to bring you a new and improved #HAChat 2.0.  We brought a group of fabulous ladies from the Invisible Illness community together for a live discussion while also hosting our weekly twitter chat. The result was incredible. Not only did we hear from some wonderful voices of the invisible illness community, we saw lots of new twitter handles in the chat as well!  In honor of Invisible Illness Awareness Week, here are some highlights from last week’s discussion.


But first, our

Health Activist Panelists:













What does “invisible illness” mean to you?

ThrivewithLupus: Illnesses that may not always show externally, but can wreak major havoc on the body. #hachat

Rachel: I struggled for a long time wondering if my illness counted and I found that when I started by my blog, I would get a lot of private messages, saying – I didn’t want to comment because I was worried that my illness didn’t really count. I’ve found that pretty much any illness or anything that makes you different or makes your life that is a medical condition whether it’s physical or mental, it all counts. The first step that we need to take with health activism is getting people to stand up and say that my illness counts.

Christine: I constantly hear how great I sound, or “oh you still have that?” or “aren’t you better yet?” and I think all of us can kind of identify with some of those catch phrases. But the one thing I remember and the reason that I started blogging so aggressively because, I volunteer for the Lupus Alliance here on Long Island and a girl was going to prom and she said that she wished that she had a broken leg because then at least people would understand why she couldn’t at least walk or dance at prom. And I realized how important it was to kind of get invisible illness out there because if this girl was crying to me that she would rather have a broken leg than go to prom, then there’s a problem here. And what made it even sadder is I’ve been diagnosed since I was 15 I’m 35 now and some days I wish I had a broken leg… That’s what invisible illness means to me, it’s that desire to almost want it to be visible because then all of the sudden you’ll be understood. It’s that desire to think that if it was visible then someone would take it more seriously.

klgold: OMG this prom story on @wegohealth #HAChat hits home. It was like my sr prom story not being able to explain why I couldn’t dance #iiwk12

JaneWaterman: A dear friend of mine has #lupus but is also an amputee – the visible illness doesn’t gain her any more support: it’s quite shocking #hachat


Lauren: I’ve had IBD for seven years and when I was first diagnosed I was very quiet about it and I didn’t like to talk about it… I found myself downplaying the disease a lot. And I think a lot of us tend to do that no matter what the disease is because you want to stay positive. It’s as much for the people in your lives as for yourself. In the last year I’ve been much more honest. The more honest I am with people in my life, the more they understand.

Summer: In terms of how I define “invisible illness” – anybody who has ever been looked at and judged and then accused of malingering or faking sick.


What makes invisible illnesses unique?

Rachel: One of the biggest things is that invisible illness is so rampant. I read a statistic that 1 in 2 people have an invisible illness, but no one talks about it and it can’t be seen so no one knows about it. There’s been a really strong movement for people with “disabilities” which means visible illness, but invisible illness doesn’t seem to be as epic of a struggle because no one want to hear about it.

Serenebutterfly: Invisible illnesses are unique as you never know who else is suffering out there so getting support is that more difficult #HAchat


Christine: A few years ago right after I had my daughter I actually had to go through chemotherapy for my lupus and I lost all my hair.  I had many a family member or friend say to me, “oh now you’re sick”. The irony was that the chemo was actually putting my lupus in remission so I felt the best I had in a long time, but now that I had lost my hair, now I was really sick.  I do think we have these preconceived notions of what sickness looks like or what makes it valid. If you’re in the hospital, you’re sick. But when I was getting IV chemo from a home nurse I had friends that said, “at least you’re not in the hospital”. It’s the same poison going through my veins!

kimmiecollas: even those with more visible disabilities discount our issues- even within the disability community, we tend to be marginalized #HAchat


Lauren: I wanted to put a little positive spin on things. I think in some ways it’s a gift that you can’t see my illness because I get to choose who I want to share it with and how much information I want to share. Like when I was in college and I was just diagnosed and didn’t want to talk about it all the time, I could choose not to talk about it. Now that I want to be more vocal, I can make that choice.

LAlupuslady: Aside from the “invisible illness” the revealing question… do i share? when do i share? (dating, on the job or friends) #hachat


Christine: One of the things we touched upon is that many invisible illnesses come with friends. I always joke that lupus never comes to the party alone, and it’s very hard to distinguish between illnesses that you cannot see. Is that my lupus or my fibro? I think sometimes we have to become our own body detectives of figuring out what is going on with our bodies at any given moment. Since it’s invisible, there’s no concrete answer why we’re having a specific symptom at a specific time.  I think that is unique to having an invisible illness. Many times we have more than one. We’re usually on more than one medication, which bring more than one side effect. Between all of those variables, it’s figuring out where something is coming from and how to deal with it or fix it or treat it.

Rachel: A lot of times when I’m explaining my illness to somebody new, I explain that on a daily basis I have to pick what kind of sick I’m going to be. Do I want to hurt today?  Do I want to throw up today? And the idea that you have a certain number of spoons per day can be detrimental to people believing that I’m sick. People don’t believe that you can do these amazing things and then you’re out the rest of the day.

Summer: On a good day, I’m fine. I can go out and do things with friends. I can leave my safe zone. I can shop in the grocery store. Then for reasons that I still don’t quite understand, I can have such a huge problem with those very same tasks. I don’t really know the reason behind that. I think I’m beginning to understand what a lot of my triggers are, but others are always questioning. Why could you do this on Monday but you can’t on Tuesday?

Lauren: The hardest thing for me to adjust to is that I am super type A, planner, like to know about things ahead of time.  I am not a “fly by the seat of your pants” type of person and I sort of had to learn to be one. You have to learn to adjust your expectations and adapt.


klgold: Challenging to plan ahead in that I don’t know what each day is going to bring. How will I feel tomorrow? #HAchat#Lupus

MakeThisLookAwe: When you get an invisible illness, it transports you to a different planet, w new rules, new realities, that other people don’t get. #HAChat


Christine: You also have to manage the guilt that comes with that. Just because it’s a good day doesn’t mean we need to fill it with all of the things we missed on the bad day.


How can we work together to promote awareness across invisible illnesses?

Summer: I’m finding a lot of folks my age (upper 20s) are more willing to come out and talk about specifically illness issues. There’s still a stigma associated with all sort of disorders, but the more you talk about these things, the less of a thing they become.


PeachyPains: we can work together by not comparing and or trying to make our disease more superior. its taught me to be more compassionate #hachat


Christine:  BYDLS really started with Lupus and I kept hearing people say o oh I can relate that to my MS, cancer, bipolar. At first I didn’t know how I felt about it. It was weird – the whole world was taking on something that was so closely woven into my life and was so personal. Now there were spoonies. If I can help one person help one person in their lives understand what they’re going through, then I feel incredibly blessed for the day.

Lauren: One of the best ways we can promote awareness across illness is to just be patient and empathetic with people.

Christine: A real easy way to help each other is to like each other’s posts, forward each other’s tweets and posts. Even if it’s not about your illness. Because it’s going to go back around. If I see a great post but it’s not necessarily about my illness, I feel like someone in my life might appreciate it, or that person posting it might appreciate it getting around. If we help each other through whatever social media means we have, we can be a wave of support for each other. So often we look to the outside for support but within our own little community of invisible illness online awesome people, we can support each other so much more than we give each other credit for. We can be each other’s biggest supporters.

Rachel: I almost didn’t say this because I think it’s a really silly little idea. Something that I’m doing is I’m actually handing out at school some little ribbons that are see-through, sheer, for all invisible illnesses.. Just an easy little thing to do to start conversations.


What is your “visible hope”?

Christine: My daughter. Because those times where we don’t want to take care of ourselves or we don’t want to go to the doctor or do the things that we need to do. She’s my reminder that I have to and I want to so that I can be the best mom that I can be. And actually, I have spoons all over my walls in my little office that people have sent me. All different types of spoons, wooden, metal, etc. I always say that that’s my visible hope because if people put their hope in me then I need to put hope in myself.

Lauren: I mentioned before that I worked for CCFA and I run our charity running/walking team. Every weekend I get to go to training and see our team of 60-70 people who are running walking and raising awareness some of them are patients or family members. A lot of them are people who wanted to do something nice for someone else and had never heard of Crohn’s or Colitis before. I cry at almost every practice every weekend because it’s so meaningful and empowering to see so many people banning together for a cause that maybe their friends and family didn’t know about before they started training with us. Every weekend I get that visual reminder and it’s awesome.

Summer: Part of the problem with panic disorder is agoraphobia, but before I developed panic disorder I loved nature and traveling. l and what I think I’ll start doing now is taking a photo of the location whenever I end up somewhere that I normally wouldn’t be able to access. Whether it be camping or at the top of a hill or collecting a series of photos that demonstrate to me later on that I can do this. Even after struggling with panic disorder for so long, it will really give me hope that I can do it again.

Rachel: Before I was diagnoses, I really identified myself as a dancer. I was in the color guard of my high school and never stopped dancing after that. My dreams of dancing professionally were derailed with my diagnosis. My visible hope would be my old color guard flags. I’ve kept all of my old equipment, and even though there’s no way I can participate in competitions or teams anymore, I make a point of once a week to go outside and throw stuff around and spin stuff and dance a little. It’s comforting to see them every day, and to know that I didn’t give up, If I push myself I can still do it a little. Exercise can really help chronic pain. At first it’s really awful and hurts more. But you can really treat chronic pain through exercise and dance.


Serenebutterfly:T4: My visible hope is receiving lovely comments on my blog or someone checking in on me via Twitter or Facebook – feel valued 🙂 #HAchat

SaraSpark2: T4: Visible hope is growth of support and understanding for kids who must eat differently + better diagnosis and treatment of #lyme #hachat


Join us every Tuesday at 3 PM ET for the #HAChat!  From now on, WEGO Health will be hosting a Health Activist Roundtable during the #HAChat on Tuesdays at 3 PM ET.  Well, except for the first Tuesday of every month where we will just have a chat to talk about the month’s theme, but every other Tuesday you will have the opportunity to listen in to the Roundtable and participate in the live twitter chat. There are about 20 spots available in the online meeting room, so be sure to get there early if you want to listen!



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