In this world there are “dreamers” and “doers”. I’m really glad fellow diabetic Manny Hernandez is both. Not too long after being diagnosed with type 1 diabetes (although he actually has diabetes type 1.5) Manny founded TuDiabetes.org, a community for diabetics and friends, family, or anyone “touched” by diabetes. He also created a sister site which is 100 percent in Spanish, EsTuDiabetes.org. Manny also writes a column called “Hola Diabetes” for Dlife.com. These websites, along with other programs, have been a huge support system for many and just as importantly, have increased awareness about diabetes. This awareness is so valuable to all of us and I highly encourage you to check out these websites and the awesome programs meant to empower and support diabetics.
I learned a lot from this interview and am very grateful for the quality and depth of Manny’s answers. It’s a tad longer than my typical posts yet, very rich in content so enjoy!
Manny, you’ve got some background. I see that you started out as an electrical engineer, moved on to web product managing, and became an internet marketing specialist. It looks to me when you got diagnosed with diabetes you put all of your gifts and knowledge into motion to see how you could help. From any person’s perspective this initiative is inspiring. Did you have any bumps or doubts along the way?
Actually I was diagnosed in late 2002 and I started TuDiabetes in 2007. The elements that serve as catalysts in between were my participation in a local insulin pump users group and reading the book “The World is Flat”. The group made it evident to me how powerful a support group can be and the book opened my eyes to the possibility in 2006 of making use of social networking as a concept for something other than “socializing”.
There have indeed been bumps along the way, but they have all served as opportunities to learn from. When you get past whatever may be a problem at first and deal with it, what you really have left is an amazing lesson you can take and hopefully incorporate into your “toolbox” to either avoid the problem again or be prepared for it better when it occurs again
Tell us about some of the programs you have created.
At the Diabetes Hands Foundation we run two online communities (TuDiabetes.org in English and EsTuDiabetes.org en espannol) for people touched by diabetes. Those were our first programs and I guess it can be said, the ones that have also touched the most people. The two communities receive approximately 150,000 visits every month (this is, from people who are registered members as well as from people who are “lurking” -lots of people lurk for a while before they choose to join). Of those, around half are people who return to the sites. So we believe that means they are getting the support and diabetes information they need.
Something we’re very excited about that will be launched in connection with TuDiabetes at the end of April is called TuAnalyze. This is an application we have developed in collaboration with Harvard’s Children’s Hospital Boston as a result of a CDC-funded grant that will allow registered members to enter, track and optionally share their A1c data with others. Once you have entered your data, you can keep it to yourself (which is fine, if all you want is to use the application as a log for yourself) but you can also have your data be aggregated anonymously with the data of others in your same region. As a result, for instance, once we hit a certain number of people that have chosen this level of sharing of their data, we can do things like light up a certain color their region in the map! Our goal as we launch the application in late April is to light up the entire map: we are starting with the US map, but we will be including worldwide data in the future. Ultimately, you can also choose to aggregate your data anonymously with others’ in the community and share your specific data according to the privacy settings you have for your profile page. So if only your friends can see your profile page, they too could see each A1c point you have entered.
Another VERY valuable dimension of TuAnalyze is that, if you at least choose to have your data be aggregate with others’, having a partner like Children’s Hospital Boston will allow us to learn about behaviors that may correlate with particular trends in A1c values. For example, we may find that on average people who have many friends tend to see an improvement (or see no deterioration) in their A1c levels. Can you tell how excited we are about launching this application on TuDiabetes? :)
We also have developed a series of diabetes awareness programs since 2007. Our first one was Word In Your Hand, where we asked members to share a photo of their hand with a word on it describing how they feel about diabetes. We then took the submissions and crafted a video that we launched in connection with World Diabetes Day, back in 2007. Other programs we developed in 2008 were Drawing Diabetes (collecting children’s drawings that captured their feelings about life with diabetes), Diabetes Supplies Art (creative expressions making use of diabetes supplies to produce works of art) and Making Sense of Diabetes, where we asked members for videos centered around each of the five senses in connection to their life with diabetes. In each case, we produced a compilation video, the latest of which (Making Sense…) we launched in time for World Diabetes Day, Nov. 14, 2009.
Last, in early 2009 we ran a diabetes poetry contest through which we collected hundreds of submissions from both communities. The output of this program will be a book (No-Sugar Added Poetry) that we will be proudly publishing and making available for sale to benefit the foundation in May 2010.
Diabetes and relationships has its challenges…this site is for girls and yet lots of guys are asking, what bit of advice can they get about being a diabetic guy in a relationship?
We can sometimes be a pain in the butt. Well… we can be a pain in the butt as guys too, but when you throw diabetes into the mix it can make things complicated. For example:
-Having a LOW blood sugar can make you not think straight.
-When we have a HIGH blood sugar, we can get very grumpy and perhaps irrational.
In general, if you see your diabetic spouse/boyfriend acting oddly, being TOO grumpy or TOO stubborn about a particular issue, find a subtle way to tell us to test our blood sugar. It is a good way to help us realize that we need to take care of ourselves at the moment, before we continue doing whatever it is we’re doing. :)
Is there anything in particular that has really helped you and your wife as you deal with diabetes for better or for worse?
Andreina (that’s the name of my wife) has been my biggest source of support at all times. She has been VERY patient with me in cases like the ones I described earlier! :) But she also constantly is looking after making sure that I am in control. I can’t thank her enough for what she does and how she’s there for me in ALL ways!
Technology-wise, getting on a Continuous Glucose Monitor in 2009 gave us both the peace of mind that I won’t be going horribly low overnight and not knowing about it. It’s waken us up many times in the middle of the night beeping like crazy and I’ve been able to treat the low and go back to sleep after my BG starts leveling. Also it has been great in terms of giving me trends data to deal with highs and avoid being high for too long. As a result, I was able to bring my A1c down to 5.7 for the first time since I was diagnosed in 2002. My previous A1c was at 6.4, I believe, so I am very happy with how it’s helped me.
How does your son react to your diabetes?
My son is great about diabetes. He does so many things that make me feel so happy and proud! For example, any time he sees an ad anywhere where the word “diabetes” appears, he yells “PAPA!!! MIRA!!!” (look, in Spanish). He is also very mindful of what being high or low means and he will bring me my meter if/when I need it or give me something sweet to help treat a low blood sugar episode.
Another thing he does is be a part of the TrialNet program. This is a program that anyone with diabetes and young children should look into. They take blood samples from him once a year and test them for antibodies. So far (thank God!) he’s come out negative. But the goal of the program is to learn about the behavior of the immune systems of children who are at higher risk of developing type 1 diabetes b/c of their genes (having diabetic parents).
Do you ever get tired talking about the big “D”?
Diabetes is not only in my life, because I have type 1 diabetes (so that kind of reminds you about it, when it peeks its ugly head out now and then). It is an integral part of my job, since what I do is head the Diabetes Hands Foundation (the nonprofit under which all the programs I mentioned to you run). This is my passion and I take it to heart: sometimes I may be shedding light on a particular issue related to diabetes or on the words or contributions made by another member or someone else in the diabetes online community at large. But I also take active part in the community, learn from it and nurture myself from it. I think this is something that people with a chronic condition can relate to better than, say someone living with an acute health problem that may go away soon.
What would you say, is a diabetic’s most powerful resource?
Your support network is your most powerful resource. It can be an incredible source of inspiration, support, information and all the things you need to keep at it, as we need to, in spite of the bumps and challenges we get presented with. Your network lets you remember when you most need it, that it’s OK… and that you are not alone. It also exposes you to conversations and information that otherwise is not necessarily part of your day-to-day activities.
So I HIGHLY encourage people touched by diabetes (and by that I mean people WITH diabetes as well as caregivers, spouses, friends who want to offer more support or better understand life with this condition) to join a community like TuDiabetes. It’s a great way to extend your support network and also make great friends who “get” you.
You seem to feel strongly about openly accepting diabetes as a crucial part of diabetes management (I totally agree). Did you accept your diabetes from the beginning or did this happen over time?
I have always been fairly open about having diabetes: I am a fairly transparent person, I would say. However, at first, I can’t say I was entirely open about some of my FEELINGS towards having diabetes. That first year was full of mixed feelings, sometimes guilt, sometimes sheer wonder: “Could it have been this? Could it have been that?” So in that sense I didn’t accept my diabetes from the beginning, that is, take it as something that was going to be with me and not obsess over WHY or the things I could have done differently (if any) to avoid it.
Another thing that threw a curve ball for me was the change in my diagnosis. At first my doctor diagnosed me with type 2 diabetes and prescribed a Metformin-based treatment accordingly. Of course, over the course of a few months, the treatment stopped working and I was referred to an endocrinologist. He tested me for antibodies and C-Peptide levels and it became clear that I had type 1 diabetes, or LADA (the adult version of type 1 diabetes, if you may). Accepting taking shots was hard at first for me. You grow up as an adult, used to taking things orally when you are sick, so in a way taking my type 2 pills didn’t feel too bad. But unless you grow up with type 1 diabetes, you don’t get conditioned to accept shots as a part of life as usual. So that took some time…
Once I got used to doing shots, as I was doing somewhere about 7-8 per day (I used to split my Lantus into two shots at night and two shots in the morning, following the advice of Dr. Bernstein of smaller doses in each site), getting on the insulin pump in mid-2005 was a big change in my diabetes management (my A1c improved as a result of the extra flexibility the pump gave me) but it also made it possible for me to feel even more comfortable with my diabetes.
Something I can’t answer but, get asked about is: What are some challenges about diabetes which are specific to men? For example, guys don’t carry a purse so how do you carry your supplies?
Well, one of them that we see discussed in TuDiabetes and EsTuDiabetes (there are private diabetes and sexuality groups for both, women and men) has to do with Erectile Dysfunction. All I can offer in terms of that is to invite the guys wondering about that topic to join the men’s group to learn more about it.
In terms of the purse point you make, it can be interesting, but I carry my messenger bag with my laptop almost everywhere I go (I am what you can call fairly “connected” -online, I mean). So I can carry quite a few things in there. :)
“What if” questions are fun so bear with me. What if we lived in a world where… Ok, we don’t have a cure yet, but everyone is educated about diabetes and can support those with the disease and those with the disease are all educated on great diabetes management?
Then all Diabetes Advocates (like yourself) will be very happy!! :)
Indeed, while a cure is found, we need more awareness and more advocacy. That is why we’re so happy to have launched the Diabetes Advocates program earlier this year (of which we’re happy to have you as a member), to help pool the resources of more than 20 groups and individuals who do amazing diabetes advocacy work, so we can expose more people to our work and, as a result increase awareness, help people touched by diabetes realize they are not alone and help people without diabetes better understand life with this condition and what they can do to help.
Sounds excellent to me. Gracias Manny!