Hello, I’m Mikan.
In this post, I’ll share the unique challenges of living with a rare condition called Loeys-Dietz Syndrome (LDS).
I have no family history of this disorder, yet one day an aneurysm was unexpectedly discovered. Subsequent genetic testing led to my diagnosis of LDS.
When I Was Diagnosed with an Aneurysm
A nearby clinic detected an aneurysm, and after being referred to a university hospital, tests revealed that I had an abdominal aortic aneurysm. Although I was shocked by the discovery, I had long been troubled by a pulsing sensation in my abdomen, so finally knowing the cause brought a small measure of relief.
Since I had already undergone surgery during junior high, when I was told that I would need a synthetic graft replacement to prevent an aortic dissection, I took the news positively, thinking, “I’m glad it was found before a dissection occurred.”
The genetic testing was recommended as a necessary step before the aneurysm surgery—to rule out the possibility of Ehlers-Danlos syndrome. Had it been Ehlers-Danlos syndrome, the synthetic graft replacement surgery would have been much more challenging.
Before the Genetic Test
Prior to the genetic test, I met with a genetic counselor, a genetics specialist, and a pediatrician. Since the test was required for my upcoming surgery, I didn’t fully grasp the value of the counseling sessions at the time. Genetic information is deeply personal, and coming to terms with it can be daunting. In my rush to proceed with the surgery, I wasn’t able to take full advantage of the counseling. In hindsight, I wish I had continued with counseling even after my diagnosis.
Receiving the Genetic Test Results
A few weeks later, the results confirmed that I have LDS. Having experienced many hardships throughout my life, I didn’t feel an overwhelming emotional reaction to the diagnosis. I simply thought, “I guess I need to get treated.” My calm response likely stemmed from a sense of helplessness and resignation that has accompanied me for years.
How did you feel when you were diagnosed? I’d love to hear your experiences.
One Year After the Diagnosis
Over the past year, I’ve been grappling with feelings of loneliness and a sense of fatalism. The loneliness arises from the fact that my life plans have drastically changed since being diagnosed with LDS—I find myself fixating on what I can no longer do and what I have lost. At times, I even feel that I lack value.
Because it’s rare to meet others with the same condition, I often feel isolated. However, I recently started using X (formerly Twitter) and have managed to connect with others who share my experience, which has been very uplifting.
Regarding fatalism, it might sound heavy, but sometimes I feel that my suffering is the result of past-life karma—a way of making sense of the pain I endure. This perspective aligns somewhat with Buddhist ideas; if you’re interested, you might look up “Buddhism Karma.”
I believe my struggle to fully accept my illness is due to being in the early “denial stage,” a psychological defense mechanism that helps shield me from the full weight of my diagnosis. I expect my feelings to evolve over time, and I’ll update this post as my journey continues.
Feel free to share your thoughts and experiences in the comments—I’d love to know how you’ve felt when faced with a similar diagnosis.
