In March of 2008, we started TuDiabetes because we saw that too many people with diabetes were feeling isolated instead of benefiting from the shared experience they could have by connecting to other people touched by diabetes.

Today, Diabetes Hands Foundation‘s networks allow members to find support locally and globally. Our more than 23,000 members describe the TuDiabetes family as a lifeline, a source of guidance, a sanctuary, and even a college education! We proudly connect advocates, artists, dreamers, thinkers, and people touched by diabetes of all types so that all of us may live a more expansive life with diabetes.

I sit back and reflect on where we were five years ago and where we are now:

- I have learned to stay flexible, both about my diabetes (not pretending to be perfect) and in the way we do things on TuDiabetes and the Diabetes Hands Foundation (adapting to changing circumstances, challenges, and signals along the way).

- I am more hopeful than ever: I have had the opportunity to talk with (and share the conversations on video) with some of the world’s most brilliant minds working to make our lives better and one day have diabetes be a thing of the past.

- I have witnessed the power of social media beyond socializing: seeing how connected people touched by diabetes now feel better understood and more empowered. Who would have imagined this when MySpace was the big thing?

On our fifth birthday, please help us keep going strong in our mission to improve the lives of people living with diabetes worldwide.

If all members of TuDiabetes donate $5, we will raise more than $100,000. Our goal is less ambitious: we are seeking to raise $20,000 before the end of March. So we ask you to give us 5 dollars, or more if you can.

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Thank you for your support! And here’s to another 5 years!

]]> http://askmanny.com/2012/03/its-the-birthday-of-tudiabetes/feed/ 1 http://askmanny.com/2012/02/2012-kuk-sool-won-myfitnesspal-and-weight-loss/ http://askmanny.com/2012/02/2012-kuk-sool-won-myfitnesspal-and-weight-loss/#comments Thu, 02 Feb 2012 21:41:55 +0000 askmanny http://askmanny.com/?p=4033 Continue reading →]]> Late 2011 I made a commitment: I will lose the extra pounds I have been wheeling around for the past 1.5 years… You heard me!

So I started doing two things:
1) I started going to Kuk Sool Won classes twice per week. This is a Korean martial arts system founded in 1958. The video below shows Master Tom Brewer, our instructor and owner of the Berkeley school we’re going to.

2) I started logging all my meals using a very convenient app called MyFitnessPal. Think of it as WeightWatchers (the app) without the points, focused on calories. For people with diabetes like myself, it also doubles nicely as a carb counting tool. One of the biggest benefits I have found it to have is that you can scan the barcode on nearly ANYTHING you can find in order to save yourself some data entry: only one food item I have scanned in nearly one month has failed to appear on their database.

So far, in 20 days of logging all meals in MyFitnessPal and about 10 classes, I have managed to lose just over 6 pounds. The goal is to lose another 20 in the next few months. I will keep you posted…

I have apologized so many times about my absence from this blog, that I figured I’d stop doing it and just post whenever I can and… so be it!

A friend of mine shared a NY Times article tonight with a group of us that brought me out of my blogging withdrawal, a piece titled “Cracking Open the Scientific Process” that questions the process of peer-reviews in medicine and scientific journals.

This article is more than just on to something: it’s in line with the future… mash-ups, crowdsourcing, social sharing, web 2.0… call it what you want… As a matter of fact, in many areas this is not the future but rather the way the present is lived and breathed. But the world of scientific research has been slow to adopt Web 2.0 trends.

The truth is information wants to be free and be shared and it will be! A few years ago who would have given ANY credibility to what a bunch of patients living with a chronic disease had to say about the disease they live with 24/7. Today, the Diabetes Online Community is a force that influences legislation, research, product development, you name it…

Researchers that are closed and not willing to share in their approach may be able to “run” but they can’t hide. Funders are realizing more and more that this kind of “my precious!” type of research has produced very slow progress in many fronts. They are seeing promising trends like the partnership between Innocentive and JDRF around a $100,000 challenge for innovative ways to approach the discovery and development of a glucose-responsive insulin drug as a means to treat insulin-dependent diabetes…

Another great example of this trend can be seen in Boston-based nonprofit T1D Exchange. They developed Glu, a new portal for people with type 1 diabetes, as a means to communicate with the community and to advance diabetes research through surveys and studies. You can read more about this initiative in this recent interview with Jen Block, their Clinical Content Manager.

Could a cure for type 1 emerge from the information voluntarily-shared by people living with type 1 diabetes? Perhaps. Could we as a community (of patients and researchers) learn more from it? You bet! I know we have done so through TuDiabetes and TuAnalyze, with a universe of participants of just over 3,000 people touched by diabetes. Imagine the potential!

So, the flood-gates of information sharing in the scientific world are opening. Who is ready for what is coming?

Disclaimer: Diabetes Hands Foundation (where I serve as President) has collaborated with T1D Exchange in the development of Glu.

With November, comes Big Blue Test, one of the most important diabetes awareness programs at the Diabetes Hands Foundation… I will tell you more about it in a few days, but for now, I wanted to share this preview video of the 4-episode series by HealthiNation about the work we do at Diabetes Hands Foundation. Hope you enjoy it!

La presentación que compartimos en SIMO Network (Madrid), el 6 de octubre del 2011:

1) La historia de Melissa:creció con diabetes tipo 1, escuchando que nunca podría ser mamá.  Decidida a tener una bebe, logró mejorar su control con todo lo que aprendió en TuDiabetes.org. Tuvo una hermosa bebe y ahora espera un segundo bebe.

2) La historia de Alana: luchando con un tratamiento para diabetes tipo 2 que no le daba resultados, eventualmente aprendió que los adultos también desarrollan una forma de diabetes tipo 1 (también llamada diabetes tipo 1.5 o LADA). Le pidió a su doctor que le hiciera dos pruebas sobre las que aprendió en un grupo de personas con LADA en TuDiabetes.org y salieron positivas. Su doctor aprendió sobre algo que desconocía y pudo prescribirle el tratamiento correcto.

3) La historia de TuAnalyze (EsTuAnálisis en español): esta aplicación ha permitido a los miembros de TuDiabetes.org y EsTuDiabetes.org agregar y compartir opcionalmente la data del control de su diabetes. También incluye un módulo de encuestas el cual estamos próximos a utilizar para ayudar a identificar potenciales problemas con dispositivos o terapias para la diabetes.

4) La historia de un libro de poesía sobre diabetes: No-Sugar Added Poetry recoge poemas escritos por miembros de TuDiabetes.org. Con el patrocinio de Laboratorios Roche, publicamos un volumen que hoy en día permite que las personas que lo leer no se sientan solos en la etapa de su vida con diabetes en que se encuentran.

5) La historia de la Gran Prueba Azul (Big Blue Test): los participantes de la Gran Prueba Azul se miden el azúcar en sangre, ejercitan por 14 o más minutos, se miden el azúcar nuevamente y comparten la experiencia con la comunidad. Normalmente observan una mejora en los niveles de azúcar en sangre de un 20%. Para promover el programa, el patrocinante ofreció una donación de US$0.75 por cada una de las primeras 100,000 vistas que recibió el video promocional que produjimos. Como resultado, donaron $75,000 que fueron distribuidos entre dos ONGs dedicadas al trabajo humanitario entre pacientes con diabetes en el tercer mundo.

This week was packed with lessons… you go through life swabbing your ears like nothing and then one day… PUFF! You are taught a huge lesson by nothing more than a Q-Tip! Here are the tips I learned from this unlikely teacher this week:

 
• Never… I mean NEVER, stick a Q-Tip inside your ear canal: it happened to me and it can happen to you -you can find yourself trying to scare off a fly and accidentally push the q-tip inside your ear.

• Flying with a ruptured eardrum is not as dangerous you may think. The reason is that pressure change due to air travel pushes in on the eardrum. But when there is a hole in it, the pressure on both sides is equal, so there is no need for you to compensate as you go up or down.
• Corollary: when you DO compensate, you feel “air” oozing out of your ear… very weird sensation, I have to admit.
• A perforated eardrum causes temporary (partial) hearing loss: know when you go into a pool and you come out with water “stuck” in your ear, how your hearing is sort of muffled? That is exactly how I hear now from my right ear. The difference is that I cannot get rid of the water and hear OK again. I need to wait about six weeks for the eardrum to heal.

After my appointment with the ENT yesterday, I have confirmed in a month and a half hearing should be restored, as long as I keep my right ear dry and clean. Still, I don’t recommend this experience to anyone… it sucks… a lot!

Show your OUTRAGE to UNITE for a Healthy Future, Sept. 18 in Central Park, NYC:
https://www.facebook.com/event.php?eid=242368832453916

• ¿Cuál es el rol del médico en las redes sociales?
• ¿Cómo se convence al médico para que prescriba redes sociales a los pacientes?
• Relación del e-paciente con otros agentes sanitarios

Gracias por la oportunidad de compartir con los seguidores de Diario Médico.

Vean la entrevista con ePatient Dave y un excelente sumario del Curso Salud 2.0 Euskadi.

Esta es mi presentación sobre Comunidades de Pacientes con Diabetes en Salud 2.0 Euskadi: