Living with Marfan syndrome

From the first interaction, I immediately knew that I was talking to a confident, intelligent, and brave human being, who not only fights for herself but also for others’ health by raising awareness about Marfan syndrome.

While talking to her, we discussed many different topics, such as her passions and what she enjoys doing as a person living with Marfan syndrome.

“I love researching about art history and I like to read, write, and paint,” she shared. Despite facing physical challenges, art history remains a source of joy for her.

My next question was about facing and overcoming challenges, and she shared:

“Bullying mostly, and overcoming it was hard, as I was bullied a lot in my teens for the way I looked. I also find it hard to use my hands as I have nerve damage in one of them, so painting with a paintbrush became hard for me. but I started to use my fingers to paint instead. I went on to earn a master's degree, and a postgraduate certificate in education (PGCE) in fine art. so I overcame that challenge very well”

From my point of view, these words are inspiring not only for people with Marfan syndrome but for individuals with other disorders as well. 

My next question was about how well-supported she felt from family, friends, and community.

She responded that her partner, daughter, and the community are very supportive, especially when she has some questions.

After that, I got into more details about her health management and asked if she was following any regular monitoring plan for her eyes, heart, or other systems.

She replied: “Yes, I see a cardiologist every year, an ophthalmologist every six months, and a rheumatologist once a year. I see an oral surgeon every three months for my Temporomandibular joint (TMJ) problems.”

Finally, I asked her what message she had for everyone with Marfan syndrome.

She stated: “Stay positive no matter what happens. Everything will be okay and don’t worry about what others think. Be yourself and embrace your unique self”.