RARE DISEASES AND SOCIAL MEDIA BRIDGES TO PATIENTS ACROSS THE WORLD

INTRODUCTION
1) Social media
The internet is one of the most important discoveries that changed many aspects of our daily
lives. Because of it, information is much more easily accessible, and communication is even
simpler. People across the globe can interact with each other, especially through social media.
Social media can be defined as “social interaction among people in which they create, share or exchange information and ideas in virtual communities and networks”. Social media has become present in nearly all aspects of our lives today. Social media is everywhere: almost all websites are linked to social accounts.

The social media has made it easy for people to share their opinions about everything at global scale. The web first empowered users with vast amounts of information. Social networks have evolved to progressively integrate more features and turned into social platforms with theability to host applications. Now social media platforms offer something even more powerful: personal and professional connectivity.

This includes popular websites such as Facebook and Twitter, but also more specialised communities (for example, ResearchGate, LinkedIn or Sermo, which connect scientists across the globe).

Mobile devices such as tablets and smartphones take a lot of time in our daily life. Smartphones are always connected and ready to provide users with a large number of online services through a variety of mobile apps. Smartphones are now the first device used for communication, whether it’s email, text messages, images or videos.

Social media is a ubiquitous and one of the most powerful communications tools. Patients and caregivers are increasingly online, seeking info and support. More than 80% of internet users in the US have searched online for information about health. Also, more than 40% of patients have read someone else’s commentary or experience about health issues on a website or blog.

A quarter of patients online have consulted rankings or reviews of doctors or healthcare
providers. Healthcare professionals have started to recognise the importance of social media. In this modern age, a new type of patient has become more prevalent: the e-patient. They often use the internet to do research on their condition, cures or alternative therapies, and use electronic tools to help them cope with their disease.
Social media can prove to help many areas of medicine. First of all, it can help improve
communication, educate patients and promote health. Secondly, it helps bring together
researchers and reference centres from all over the world, joining together their effort in
diagnosing and finding cures for illnesses in most difficult cases.

2) Rare Diseases
Many Rare Diseases (RDs) are life-threatening degenerative or chronically debilitating diseases with a low prevalence and a high level of complexity. The life expectancy of RD patients is significantly reduced. Some RDs are compatible with normal life, if diagnosed in time and properly managed. RDs can affect physical capabilities, mental abilities and sensorial capacities;

65% of RDs generate several disabilities which often co-exist (polyhandicap). These disabilities enhance the feeling of isolation and could be a source of discrimination and reduce social integration.

For a disease to be considered rare, it must usually have a prevalence of less than people (EU standard).

However, only about 100 rare diseases are near this threshold, as most affect as low as 1 every 100 000 people, such as haemophilias or Duchenne muscular dystrophy. Thousands of RDs affect only a few patients in Europe (such as Alternating hemiplegia, Ondine Syndrome or Pompe disease). However, 80% of all RD patients are affected by approximately 350 RDs.

There are approximately 7000 known RDs and about 6% of the European Union population is affected by it, or 15 million people. It is estimated that about 3.5 million people in the UK will be affected at one point in their life by one. In the US, 1 out 10 citizens suffers from a RD, which raises the number of patients to 30 million, and across the globe, to a total of 350 million. It is therefore, vital that cures for these diseases are found. There are approximately 200 orphan drugs approved every year (orphan=drugs for RDs), however this is very low in comparison to the existing RDs, of which at the moment only 5% are curable.

The challenge that lies in understanding more about these illnesses is that there are so many RDs, that they are very complex and varied. Furthermore, the number of patients affected by one RD is very low and spread out over a large area. It is hard to conduct research and develop drugs for them. Most clinical trials for more common sicknesses require up to thousands of test subjects. However, there are barely up to 1000 people in the whole of UK who suffer from Ewing Sarcoma, for example, or any other RD which has such a small prevalence of about only 1 in 100 000 people.

Another reason why diagnosing RDs is difficult is that common conditions hide the underlying RD. An example would be autism, which is actually a major symptom in Rett Syndrome or Sanfilippo disease. Many RDs are genetic diseases; however they can be caused also by environmental factors, during pregnancy or later on in life, in combination with genetic susceptibility

Source: medlink-uk.net

See on Scoop.itSocial Media, Medici, Medicina e Stampa 3D

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Informazioni su Tiziano Galli

Dal 2002 mi occupo di formazione residenziale ed eLearning e ho conseguito un Master in Scienze dell'Educazione a Lugano e precedentemente una Laurea in Medicina e Chirurgia. Ho scritto il libro " Medici, Pazienti e Social Media". Sposato e Penta-Papà sono dirigente sportivo in LNA Svizzera per Rugby Lugano e ARSI (Associazione Rugby Svizzera Italiana)
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