Cruising for Myositis

In 2012, Raj was diagnosed with a rare Myositis disease called Inclusion Body Myositis (IBM). Doctors do not know what causes the disease and have no cure for it. They believe that it shows autoimmune behavior. It has very unique characteristic in that it impacts the extremities such that the muscles in the arms and legs atrophy.  Over time the patient loses the ability to use the arms and legs for daily functions. The disease is very difficult to diagnose. Because of the rare nature of the disease most medical personal worldwide do not know the symptoms or how to diagnose the disease. Even the top IBM experts in the field miss the diagnosis 15% of the time. As part of the 7SKO project we will meet with doctors and medical institutions  in all the lands that we travel and will bring the Myositis knowledge to the forefront.

 

There are many great organizations that provide detailed information on Myositis diseases. While we are providing similar information at a summary level at this site, our focus will be to show that Myositis related diseases need not stop patients from enjoying their life to the fullest. We believe that the joys of exploration and the rich experience of diverse lands and people can be attained by all, with or without Myositis. The disease does change the normal to a ‘new normal’, so all it needs is physical and mental adjustments. People can be disabled and have fun or be disabled and be miserable. Certainly, diseases bring good days and bad days into our lives but with proper attitude the GOOD should far outweigh the BAD.

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This purpose of this site and our mission is NOT to raise money for research. There are enough organizations doing that. PLEASE DO GIVE! We’re going to focus on being positive, a little crazy and having fun. We invite others who are similar minded and bring a great attitude to join us. Positive craziness is mandatory. We will blatantly steal ideas for fun by searching the internet, doesn’t matter which culture it is from. We encourage all myositis patients with pictures and movies of varied activities and helpful ideas to submit them to our Gallery section.

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In the process of discovery, we will also explore new and existing technologies that make life more ‘normal’ and accessible. We will test drive mobility devices such as powered bicycles, scooters, drones (OK drones are just for fun), adaptive equipment and physical therapy units. We plan on creating Blogs and videos reviewing the products (and sometimes falling on our derriere) and reporting on the efficacy of the solution.

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We will also explore alternative medicines and treatments. No voodoo practitioner will be beyond our scope. If we hear that a specific sort of snake oil fixes all the ills, we will try it (if it’s safe). And then we will resell it and bilk people out of their hard-earned money (that is a joke). The serious point here is that the modern medicine does not have all the answers and perhaps there are other ways.  Mankind has been using natural anti-inflammatory cures for millennia. We will give it a shot.

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