Chloe Gamblen - Marfan Syndrome Awareness

My name is Chloe, I’m 18 years old and I suffer with Marfan Syndrome. Marfan Syndrome is a genetic disorder that affects the connective tissue and has many physical symptoms that make it easy to detect the syndrome. It affects approximately 1 in 5000 people, and I happen to be the 1 within that statistic. This blog is my way to tell my story and help make other people aware of the syndrome.

I was diagnosed at 6 months old after a school nurse suspected my brother, Tom, suffered with it. He was tested as well as my dad and it came out positive for Marfan Syndrome. I was then tested to see if I would also be affected and I was. I am the shortest out of my Marfan family, being 5’10. Whereas my dad is 6’6 and my brother is 6’7. I prefer being the “shortest” as it means I don’t stand out as much for being tall. Marfan Syndrome has also affected my weight, so my body is very slim and long. This can sometimes be a good thing, but it can also be a bad thing as I have been a victim of bullying throughout my school years. People didn’t understand my illness so I was the pinnacle of hurtful comments. However it has only made me grow stronger as a person and more determined to educate people on the syndrome.

My health so far has been really good, I haven’t had any major problems and I haven’t needed any surgeries. My brother hasn’t been so lucky, having suffered 2 major strokes, a pneumothorax and a valve replacement surgery. My dad has also had this surgery. I’ve been told by doctors that my valve is healthy and I won’t need the surgery just yet. I will need it eventually but right now I’m doing well. I regularly see doctors so they can track how my valve is doing, so I’m relieved that I’ve not had any problems as of yet.

I really want to try and make more people aware of Marfan Syndrome because not a lot of people have heard of it, or they have heard of it but aren’t completely sure of the facts. I hope that with this blog I can reach out to more people and teach them about the syndrome, and I also want to be a voice for those who aren’t confident enough to speak out themselves. We all need to stick together and support each other.

“With the new day comes new strength and new thoughts” - Eleanor Roosevelt

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