For Rare Disease Day I wanted to share a bit about my rare disease: Hereditary Angioedema. However, there is another disease that I suffer from that is considered a rare occurrence.
I suffer from Age-Related Macular Degeneration.
What?
Early Onset Age-Related Macular Degeneration.
I suffer from Age-Related Macular Degeneration.
What?
Early Onset Age-Related Macular Degeneration.
My eyes, on the inside, look like they are over 70 years old. The drusen were visibly forming by the time I was 18 and the disease was diagnosed when I was 21. My optometrist noticed some drusen at age 18 but thought it was due to Prednisone, inflammation, or due to another condition. By the time I was 21 (and had been saving for Lasik) is when he realized it was more than just an unfortunate side effect. I was told I would eventually go blind, and that because they had never seen this in someone so young, they did not know how quickly or slowly it would progress.
I have been lucky up to this point in the sense that it has progressed slowly. I was warned this year, however, that that may change sooner rather than later.
I have been lucky up to this point in the sense that it has progressed slowly. I was warned this year, however, that that may change sooner rather than later.
It is a tough thing. I have always been so proud of my blue eyes. It has always been one of my best features, and a very clear sign of my dad. So it is an odd thing to feel both proud and resentful of something. Now, when someone compliments me on my eyes, or says 'I wish I had your eyes', there is a little pang behind my sincere 'thank you'. I love my eyes - regardless of the disease behind them.
Rare is beautiful.
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