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Real Talk With Dave: The Power of Social Media In Bringing Type 1 Diabetics Together

I’ve started my journey on social media as a Type 1 Diabetic back in 2014 when the idea of social media was just beginning to pick up. Since then, I have noticed a huge growth in support, awareness, and a building community develop right before my eyes. Being a T1D, I go through things that many non-Diabetics simply do not understand or are unable to relate with. Social media, however, has opened up that awkward space, allowing Diabetics to find other Diabetics going through the EXACT same thing.

I can honestly say that I was in a dark spot in my life right before I created my Diabetic-based Instagram page and shortly after creating @type1livabetic, I saw how many people began to visit my page, Diabetic or not, and they all were someone who seemed to have a familiar idea about T1D. It makes a huge difference when your audience actually knows what you are talking about. As we are being completely real here, I want to share how important social media has been to me thus far and how it can be just as important to you as well.

The amount of support and care that others can provide online, simply by sending a quick message or commenting on a post can play such an important part in our lives, more that one can imagine.

The Diabetic community, as sad as it may seem, is growing quite rapidly, but that just means that there are more and more people each day who are out there, sharing what they go through, looking for support, and being a shoulder to cry on during some of the worst days possible. That being said, there is a large community out there just waiting to help out and lend a hand as Type 1 Diabetes is no joke and is very real. When I have a rough day, I simply put out content when I feel like I need relief and support and in return, I get some of the kindest responses. Those are the moments in my Diabetic life in which I feel like I can continue and push through that rough spot.

To me, social media is about allowing for creativity and our own unique space in which we can share our style and personality with others. I love prepping my posts where I apply my own unique creativity and do designs, lettering, and illustrations on my photos, hoping to excite the viewer and show them that Diabetes can be fun, regardless of what it has to throw our way. Social media was designed to give people a purpose and a platform in which they can connect and share openly with one another things that interest them. Having a group of people in the Diabetic community staying loyal and true to what really goes down in their lives allows for more people to be inspired and share.

The bottom line is that having a space to feel comfortable in talking about something so huge (Diabetes) is so important to an individual. Now a days, really young people are joining the social media game and it is important that they find the support that they may be looking for. Some days I even forget that I have T1D, simply because I have a huge online support group that keeps me going and is cheering me on, allowing me to feel inspired and positive that I can continue to take on this disease, one day at a time.

The Importance of Quality of Life

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The mission and core of the company I have managed for many years focuses on supportive care and the quality of life of cancer patients. The value of the quality of life is important to all patients, whether they are diabetics or affected by a rare disease or by cancer. The decision to focus on treatments to improve the quality of life in oncology is both an institutional and business choice, and comes from an unmet need, from personal experiences and experiences of friends who have suffered pain and complications related to chemotherapy and cancer.

A concrete example is my dear friend, Rocco Magnoli, a famous Italian architect, who designed shops, hotels, churches, monasteries and mosques in different parts of the world.  He died of multiple myeloma cancer after three transplants and after suffering immensely from all of the treatment-related side effects such as nausea, vomiting, mucositis and diarrhea,  despite the excellent treatments received at Little Rock Arkansas, the best center in the world.

Cancer has recently been defined by CNN (1) as an “imminent disaster,” as it is the second leading cause of death with 8.2 million deaths in 2012, a number that is expected to surge 57% within the next two decades to reach 22 million of cases(2). The social and health costs of cancer are immense, amounting to more than one trillion dollars in 2010(2).  The development of this disease does not only influence developed countries, but also new countries under development, with over 60% of cases in Africa, Asia and South America(2).  Cancer has, on the other hand, become an increasingly chronic disease, thanks to new chemotherapy, antibodies and hormonal therapies, bringing the survival rate to five years, from 49% 20 years ago to more than 68% today with a peak of over 90% for breast cancer, prostate, thyroid and skin tumors(3).

However, the main problem is that cancer patients live longer but with a reduced quality of life. The side effects can include pain, nausea, vomiting, diarrhea, anemia, neutropenia, anorexia, cachexia, mucositis and more. This is where the importance of “cancer supportive care” comes into play, with the aim of reducing or eliminating side effects, improving patients’ quality of life, increasing the maintenance therapy and treatment, and potentially increasing patients’ survival rates. In my opinion, it is important to change the medical approach toward the patient from a purely pharmaceutical prescription vision to a more holistic one, a 360 degrees approach, developing not only drugs but other products and services.

My vision is in fact that of “building cancer care together.” Our product pipeline in cancer supportive care is not an endpoint but a starting point for further development in this area, with significant future progress of new products.

However, as previously mentioned, the vision is not only pharmaceutical.  There is the possibility of additional products and services such as food supplements, medical food, medical devices, complementary Chinese medicine and mHealth. The approach is to focus on the patient and his/her family and to collaborate with doctors and associations to develop new extended therapies. Two years ago, I started an activity in the food supplement field together with our American partner, forming a new line of food supplements based on substances such as ginkgo biloba, curcumin, essential amino acids and glutamine, a significant contribution to improving the quality of life.

Moreover, in the past two years, I have established an American investment fund specializing in medical devices and iHealth (online medical services for patients) in the interest of improving the quality of their lives.

Continuing the 360 degree view focused on the patient, I have also invested in Chinese medicine, not as an alternative medicine but as complementary support to western medicine, by means of the use of Chinese herbs and acupuncture for the best treatment of the patient and for an improvement in the quality of life. Recently, I have also invested in information technology through a financial investment in a company that manages the patients’ clinical and laboratory data with the possibility of sharing and managing them on their own.

The importance of the internet and the new means of communication is now evident to everyone (just think of Lyfebulb) and it could be a further step forward for “cancer supportive care.” mHealth(4) is a new approach in giving more autonomy and potential to patients who are eagerly encouraged to share clinical data, medical examinations, medical support and medical associations.  In addition, this technology allows for better data transparency and clear and precise information. It allows patients to retain and manage their own personal medical records, improves the two-way communication between doctors and patients, and allows global access, including in remote and under-developed countries. With this new technology and information devices, new opportunities are also given to cancer patients and to the cancer supportive care area. Mobile Health is already widely used in certain therapeutic areas, such as diabetes,(5) and cardiovascular diseases(6), but it has not registered such an increase in cancer therapies.

In conclusion, all of my activities are based on the philosophy “we see people before patients.”

Riccardo Braglia

CEO Helsinn Group

References:

(1)CNN.com, 5 febbraio 2014

(2) WHO world cancer report 2014. www.who.int

(3) American Cancer Society, surveillance research 2014

(4)http://en.wikipedia.org/wiki/MHealth

(5)http://openmhealth.org/open-mhealth-case-study-diabetes-2/

(6)http://jaha.ahajournals.org/content/2/6/e000568.short?rss=1   

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