Genetic Condition Support

How can you find genetic condition support for yourself or a loved one?

I found out I had Asphyxiating Thoracic Syndrome, also known as Jeune Syndrome, when I was 13 years old. I was so overwhelmed with this information that I decided to ignore my diagnosis and thus, conceal my visible difference until I was 26 years old. I was able to do so in part because my condition is very mild, everything else except my 4th short toes on both of my feet look “normal.” To a geneticist eye, however, I have short limbs and arms. I get bad knee pain after a long flight or while driving long distances, because airplane chairs and car pedals are made using “average” human measurements, an average to which I am an outlier. 

People diagnosed with Jeune may also develop high blood pressure, liver disease, pancreatic cysts, dental abnormalities and retinal disease, leading to night blindness and/or tunnel vision. I do not have any of these diagnoses and because of this, part of me felt like I had no place joining the disability community. The other part of me was very aware of the ableism that exists in our society, so I wasn’t particularly drawn to include myself in this definition. It wasn’t until I read Unspeakable Conversations by Harriet McBryde Johnson: “for those of us with a congenital condition, disability shapes all we are”. I don’t remember a life post-Jeune, I was born with Jeune and the only life I know, even if I didn’t know the exact name of my diagnosis, even if by law I do not have a disability, is with this genetic condition. 

Coming to terms with the word “disability” has been less traumatic than accepting the word “disfigurement” as part of my identity. For many years, the word that most accurately describes my feet would haunt me. The word disfigurement made me think of The Hunchback of Notre Dame. It wasn’t until I decided to create a brand and a community around the word “disfigurement” that I was able to consider and eventually, proudly recognize myself as disfigured. Accepting that I am someone living with a disfigurement was the first step into also recognizing my genetic condition, being able to say its name Jeune Syndrome, and taking the steps to understand what having this diagnosis really means, not only for myself but for my future family. 

At MIGA Swimwear we tell the stories of women’s experience with disabilities, chronic illnesses and disfigurements, or visible differences, but in truth we are here to tell the stories of all bodies and their resilience. According to my geneticist, a man that knew me before I was born, “everyone has something”. We want to be that place, where you come to find out the life experience and the quality of life that people with different diagnoses have. As mentioned in Johnson's essay: "The public in general and physicians in particular, tend to underestimate the quality of life that people living with disabilities have". We are here to say that having a disability is something to be proud of, is not something you have to overcome and our lives are no better or worse than the lives of those that are able-bodied. 

If you liked this blog, make sure to join us at the Global Genes LIVE! A RARE Patient Advocacy (un)Summit, where I will be presenting a session about The Power of Human Connections and Resilient Communities on September 25th at 12pm EST. Join me!


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