Dear Young Amanda,
When you were diagnosed at 31, I would like to share that this was not a death sentence. I realize that when someone gets diagnosed with a chronic illness, you think you must stop living your life, and I have to say that it is the farthest from the truth. I feel that the layer on top of being diagnosed with IgA nephropathy, which is a rare disease, will be EDUCATION, which is the MOST IMPORTANT. I feel that you need to be able to advocate for yourself while going through this disease journey.
If I told you that you would not be really bothered in the first 11 years of your diagnosis, would you have changed anything that you did leading up to your first flare-up, which came in the Spring of 2018? I’m sure the years leading up to 2018 were never perfect, but you were stable, and that’s all you ever wanted. Remember when you got diagnosed, your old nephrologist told you that you would be lucky if you got to the age of 40 without dialysis or a transplant. I feel that you must remember that you have this chronic illness, but this does not define you as a person, just like your job does not define you either.
Your first real test of adversity on your disease journey came in the Spring of 2018. You had your first flare-up, and you were completely lost for words, emotions, etc. that your body could turn on you like this. WOW, was this a wake-up call to you personally because this flare-up was due to STRESS that was not manageable, and you kept it to yourself. The experience of 2018 was a bump in the road on our journey, which led you down a path of finding a new nephrologist with groundbreaking ideas on disease and treatment in the years to come.
In conclusion, you are now 46 years old and your GFR is 17, but you are in the hands of a great nephrologist in Philadelphia who TRULY cares about your mental well-being as well as your kidney health. You have always taken your IgA nephropathy seriously in all the food options that you have had to follow since 2007, and although you still remind your family, friends, and work colleagues that you make choices because you have to, you DO NOT NEED TO EXPLAIN your decisions. Since the COVID-19 pandemic in 2020, you have also been very diligent in not being around people in crowds without a mask on because, AGAIN, you need to, and no explanation is needed. Remember, your motto from 2018 and something you live by each and every day, “You are stronger than you’ll ever know!”
Warm Regards,
Old Amanda
Keyaira S.
Rachel M.
María L.
Stacey B.