If you're at the beginning of your journey, we hope this gives you something useful to hold onto:
“I wish that I would have listened when someone had told me early on to find someone with PNH to talk and relate to. After a year of suffering and feeling alone, I decided to find someone and we've been best friends for 18 years now. There is no reason to suffer alone.”
“One thing I wish I would’ve known when I was first diagnosed is that there are people going through the same thing as you and you are not alone. I would tell a newly diagnosed person to take it one day at a time, things are going to happen regardless. You will have good days and bad ones, soak in the good days and don’t be afraid to rely on your support system when you need to :)”
“To people just being diagnosed, research and get information for yourself. I do wish the doctor had told me a little more about what to expect down the road (more specific). If you are in the very early stages of IgAN, take baby steps to change your eating habit so that later down the road you don't feel overwhelmed with having to change so many things. If you need to lose weight, do it sooner than later. Get with a nutritionist to help. If there is a dialysis place near you (I use MyDavita web site) they have support and they have great meal plans to get you started. Things can be very overwhelming so just take things 1 step at a time.”
“Someone told me to get ahead of it. Change your diet & take better care of yourself. Your life is too precious.”
