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Good News is, You Don’t Have Any of the Genetic Variants of EDS (Ehlers Danlos Syndrome)

"Good news is you don't have any of the genetic variants of EDS (Ehlers Danlos Syndrome) unfortunately you did come back positive for BRCA2".

Date:

August 31, 2023

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“Good news is you don’t have any of the genetic variants of EDS (Ehlers Danlos Syndrome) unfortunately you did come back positive for BRCA2”. I looked at my mom who clearly already knew this as the doctor kept talking “Being BRCA2 positive means you are at an increased risk for breast and ovarian cancer (I would later learn I was also at an increased risk for melanoma and pancreatic cancer, but they were not as dramatic a risk as breast and ovarian.)” Tears began to well up behind my eyes, but I did not want them to fall so instead I dug my fingernails into my palms as hard as I could to distract myself. My mom grabbed my hands so I would stop before I broke through my skin as the doctor talked about the next steps. I wasn’t upset that I was at an increased risk of cancer. I have been sick since I was 12, surgeries, hospital admissions, infusions, the whole shebang. Cancer would just be another diagnosis to add to my ever-growing list. What upset me was the type of cancer that I was predisposed to. Breast and ovarian. Both are such gendered cancer. You hear them and they scream “woman”.

As a nonbinary person with gender dysphoria, it was my worst nightmare. Any other cancer such as leukemia, lymphoma, thyroid, melanoma, etc. that are diagnosed both in men and women, with gender neutral awareness ribbons I would’ve been fine with.

The first time I rolled into Moffitt’s breast clinic my worst fear was confirmed everywhere in sight there were pink ribbons, signs saying “ladies only”, and the robes everyone was given to change into were bright pink. My blood boiled; both for others like myself and for the cisgender men who are diagnosed with breast cancer that have to experience this lack of representation. While BRCA2 has been bad in many ways one of the blessings in disguise is that whenever I have my prophylactic double mastectomy, I hope it will alleviate my gender dysphoria.

I am only 21 years old, and I have already had 3 breast MRI’s, 2 mammograms, 1 breast ultrasound, and 1 breast biopsy. Unfortunately, they have already found precancerous cells in my left breast (atypical lobular hyperplasia). But I keep smiling and fighting :)

Nat Rijos
Instagram: @chronically_floridian

August 31, 2023
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