It’s that time of year again, when our hidden condition gets talked about. February is Marfan Syndrome awareness month which means that people are eager to talk about a syndrome that not even all health professions are clued up about, although this is improving slowly. Each person with Marfan Syndrome is affected differently, ranging from mild to severe and every form inbetween. Diagnosing such a complex syndrome is not the easiest for health professions but since I was diagnosed at 4 , this is just my version of what living with it is like.
Life is never boring with Marfan Syndrome around. I mean, expecting the unexpected in regards to health kind of keeps you on your toes and prevents you from taking life for granted. Being a connective tissue disorder means that most parts of your body are prone to playing up, although it is an unlucky lottery to which ones actually do. In general, Marfan Syndrome can affect the heart, eyes, lungs, skeleton and blood vessels but can affect any of the body’s connective tissue. From affected gums and overcrowded teeth to gastrointestinal issues and persistent fatigue, there is no size fits all diagnosis that applies to all. Personally speaking, Marfan Sydrome only affects my sight (registered blind with only partial sight from birth,) weakness in the lungs and skeletal system the most (scoliosis, multiple dislocations, joint pain, breaks and ligament and soft tissue damage). It could be far worse.
Growing up, I looked the odd one out, being the tallest in the class and being really slim with extra thick glasses. Today, you would find it hard to tell I have Marfan Sydrome being only 5’7″ (pretty short for a Marfan’s person), having a body that is built more for comfort than speed (my thin days are looooong gone) and I no longer wear glasses but my white cane and Munch my attention seeking Guide Dog may give others a hint about my sight. In my family where we have several members with Marfan Syndrome, the odd ones out are the ones without Marfan’s.
For me and many with Marfan’s, pain is a normality and I only acknowledge the pain when I am pain free. Joints often hurt, scoliosis sucks and random injuries like to make an appearance but that is just life. I opt for yoga over pain killers to help relieve pain and laughter over sadness of living with something that can be more than slightly annoying. I often forget I can’t see until I bump into something (a talent of mine) and always remember to thank my body for doing such an amazing job of keeping me alive. Yes living with Marfan’s can be tough but it can also be quite beautiful.
If I had lived elsewhere in the world, I may not have been able to have my 5 operations that I have had due to complications from Marfan Syndrome. If I had not understood the importance of health checks from such a young age, I would never have appreciated the beauty of life. If I had been born with perfect vision, I would never have experienced the perfection in life that runs deeper than surface value and would never have been matched with Munch. If I had grown up thinking that I needed to look like everyone else then I would never have developed an unconditional love for all. If I could go back and chose to be born without Marfan Sydrome, would I? Definately not.
Marfan Syndrome is a life long condition with life long lessons. Knowing the symptoms can help to save a life. Unfortunately, many do not find out that they have it until it is too late. Fatal aortic dissections may be the first and last indicator that someone has Marfan Syndrome. Those of us who are diagnosed with it are blessed to have the medical care to help monitor our health and have medical interventions to help us live out life to the fullest and for that I am eternally grateful.