Dear María,
In this life you have to be strong, yes, oh yes! You are going to have to fill yourself with a lot of strength, courage, and determination to be able to live with not one but two rare kidney conditions: IgA nephropathy and FSGS. There are going to be days full of uncertainty, questions, laboratories, procedures, and treatments. There will be days when you don’t want to get up and you will ask yourself, “Why me?”
After your diagnoses, you will feel shocked and wonder what will happen. There will be more doubts than answers. You will feel fear and confusion. You want to be well for your children and your family, but rest assured that your positive attitude and trust in God will make the difference. Challenges will come your way, including an unexpected job transition and changes to your lifestyle. Through it all, you will find comfort and support from family and friends who stay by your side, and encourage you in unexpected ways.
You will find people going through similar experiences. You will connect with a community of people who live with rare kidney disease (RKD) and this will give you calm and peace. Real people affected by RKD help create a safe space to share what you’re going through and ask questions.
Over time, you will begin to share your story to reach more people with words of encouragement. Those same words of encouragement that you use to inspire others, I hope you also offer to yourself:
Live intensely, laugh, dance, travel, and surround yourself with people who love you and help you on this journey called life. You can. Have strength. You are special!
Keyaira S.
Rachel M.
María L.
Stacey B.