More than 2,000,000 people worldwide have multiple sclerosis. The disease affects almost twice as many women as men.
We Are Bermuda connected with a group called Oceans of Hope on twitter and was very curious to find out more what this group was about. They were tagging us in great photos of their voyage to Bermuda and docked in St. Georges and Hamilton Harbour. You may remember seeing “The Orange Boat” as I was told that’s what people on the street called it. We were invited to meet them on their boat and we found out that they were travelling the world to support and bring awareness to those affected with Multiple Sclerosis. I am sure most people have “heard” about it, but may not know exactly what it is. The website for Oceans of Hope called Sailing Sclerosis explains it well:
Multiple sclerosis (MS) is a disease of the central nervous system: the brain and the spinal cord. It is an autoimmune disease, where the immune system gets confused and instead of attacking an infection or virus it turns on itself and attacks nerve cells.
Cells in the central nervous system are covered in a myelin sheath, a protective layer of fatty protein. It’s a bit like insulation on an electrical cable. The faulty immune system attacks these cells and the resulting damage is called demyelination. Messages from the brain are disrupted, causing them to slow down, become distorted or blocked.
‘Sclerosis’ means scarring. Demyelination causes scars, also known as lesions or plaques, at sites within the central nervous system and the site of these lesions affects the symptoms of the disease and their severity. This is why people with MS experience different symptoms at different times. It is said that no two people experience MS in the same way.
There is no cure for MS, but specialists and treatments can help manage the condition and its effects.
In the earlier stages of MS, the central nervous system can sometimes repair the damaged myelin or use different pathways to get signals through to the rest of the body. This is why episodes of symptoms (relapses) can be followed by periods when symptoms improve or disappear altogether (remission).
Sometimes the actual nerve fibres can be damaged, in addition to the loss of myelin, and it is this nerve damage that causes the increase in disability that can occur over time.
Diagnosis is usually made in people between the ages of 20 and 40, although symptoms may appear earlier and it is possible for both children and older adults to develop MS.
Click here for original post about MS.
It was a great pleasure to Meet Luisa and the crew of Oceans of Hope and to hear their story on how they deal with MS on a day to day, or how Mikkel sees his patients. This project called Oceans of Hope is so important to get awareness for this disease and to inspire those who have to live with it day to day, that there is hope and that they are not alone. It was also good to see that they are no different then you or me, they live their lives just like the rest of us..with families, jobs, hobbies and aspirations. I could not even tell who had MS on the boat and who did not. What I would love to see is more support for local residents who have MS and other afflictions or at the very least more awareness locally as well as globally.
We talked to Luisa Matias and Mikkel Antonisen and got a tour of their boat, here is some of what they had to say…
We apologize for not uploading the video of Mikkel’s interview, but the audio quality was not good with the background noise. However here are some of the things he had to say….
When someone is diagnosed something changes inside them, some sort of entity, and it happens you seem to get into this vicious circle.
To me, as a doctor and therapist working in a treatment center it’s something that you can relate to, to some extent because it’s an existential premises for what I do.
So, what I’ve tried to do with this project is for example I have a patient of about 52 years of age who has MS, really living in fear and depression. It turned out that it was psychologically heavy damage, so to speak, and you don’t relate because you don’t hear about it.
So I wanted to change the perception of this happening. That having a diagnosis without having the therapy is not necessarily a good thing. I am sure that MS is something that happened to this person, but it is not the only thing that has happened to the person.
Now, this patient is not just an MS person. It’s a person who’s living with MS who suffers mentally, suffers from fatigue, sleep is affected..
…..but they can stand up and say, “Okay, I have MS. My life is not the same. I’m not perfect. Nobody is perfect.”
What am I striving for? This is the thing. What this boat is trying to do. It has been said by many people before but it’s something that needs to be said again and again and again.
We need to remind ourselves all the time, and in a specific case of MS that living a life, getting out in the nature, bringing on the environment in the middle of the Atlantic Ocean. You need to stand by each other.
We would like to thank the whole crew of Oceans of Hope for inviting us aboard, and being very accommodating and sharing their story with us and Bermuda. We wish them safe travels on their journey to bring awareness to MS across the world, and hope to see them back in Bermuda soon.
Want to give Luisa a special thank you for initially connecting with us on twitter sharing her photos with us. Thank you! See you soon!Recommend0 recommendationsPublished in