Marfan Syndrome and Me

Written by Larissa Gunkel, Actor, Public Speaker & Activist

June 5, 2025

I am on Disability and have a few Freelance creative part-time jobs. I am always looking for more work, it is hard. Public speaking, planning events, being on committees ar jobs I do regularly. I volunteer a lot and take part in my community, I am on a Board of Directors, too. Sometimes I don’t get jobs I want because people judge me because of my disabilities. But I am smart and capable.

I have club feet and am Type Two Diabetic. I tackled cataracts and surgery. I don’t do well too hot or too cold or with bright light.  I get heat and sun stroke side effects sometimes easily. Cold and flu side effects sometimes easily. I have skin issues, learning difficulties and Dyslexia…and Marfan Syndrome I have been diagnosed with now as an adult but have had it my whole life.

Marfan Syndrome there is No Cure: Missing chromosomes and it is a chronic condition. It worsens with stress and aging. Chronic fatigue and chronic pain. It feels like my body is locking together with cramps, spasms, and tearing from Inside out.

All my conditions, all my disabilities are invisible and visible.

It would be wonderful if others understood more on invisible and visible conditions for sure. A lot of the time on transit no one offers me a seat but I will need one so badly. Or when I have shopping bags and my walker and need more space, people don’t care. I always have to let others know and not everyone understands so it is upsetting. People get mad at me that I need accommodations. Ableism sucks!

Others need to understand why I am tired, in pain, and why I have to always pace myself. I want more people to know about invisible disabilities in general and about Marfan Syndrome. More people should learn about these things and be interested in these things.

What is Marfan Syndrome?

Marfan Syndrome is something you are born with. It changes the way your body is made. It affects your bones, heart, eyes, and skin.

How does it feel?

People with Marfan might be very tall and have long arms, legs, fingers, or toes. Some people feel tired easily or get pain in their chest or back. Sometimes the heart and blood vessels can be weak and need special care.

What do I need to know?

• Marfan is different for everyone. Some people feel okay most of the time. Others need help from doctors more often.

• You need to see your doctor regularly to check your heart and body.

• You might need special glasses or surgery.

• It’s important to listen to your body and tell someone if you feel pain or very tired.

How can others help me?

• Be patient and listen when I tell you how I feel.

• Help me get to my doctor appointments and community events.

• Make sure I get to rest while in transit and at events.

• Understand that sometimes I can do more, and sometimes I need rest.

What do I want people to know?

I am more than Marfan Syndrome. I want to live a good life, be active, and be included. With support, I can do many things just like anyone else.