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I am doing this walk to raise funds for the Marfan Trust in Britain. I have lived with Marfan Syndrome my entire life. Sadly, my dad died as a result of an aortic aneurysm due to having Marfan Syndrome. He was only 30 when this happened. I was just 10 & my sister was 6. Not much was known about the condition back then. It took almost 3 decades after this for us to fully understand the implications & all that is related to having Marfan Syndrome. I myself have had several complex surgeries on my eyes & have lost sight in my right eye. My mobility can be limited at times due to having loose joints because of hypermobility. I suffer from extreme fatigue on a regular basis & shortness of breath restricts certain activities. My son had a full aortic valve replacement at the age of 26 & has had several operations on his feet to correct his toes. My grandson who is now 8, was also born with the Marfan gene & he has been on meds since he was 6 months old. Like myself & my son, he has regular echo cardiograms to keep a check on his heart. Thankfully, because of the likes of The Marfan Trust, things have improved greatly & more knowledge is becoming available but it's still quite an unknown genetic condition, particularly in Scotland. My hope is that one day soon, Scotland will have its own Trust to provide support to sufferers locally & to bring more awareness to others of the many symptoms of Marfans Syndrome.
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