“This is one of the best diseases to have as it is slow progressing and you should not be affected until your late 40’s to early 50’s,” said my pediatric nephrologist. I vividly remember sitting on the loud white paper on the bed in my doctor’s office when I heard these words.
Being diagnosed with one of the most common life threatening genetic diseases is a little much to comprehend at the age of 10. Little did my doctor, my family or myself know that I would not follow the same family history as my Mom’s side of the family and I would endure every aspect of this disease at a young age.
This statement gave me the message that I did not have to worry about or deal with PKD until I was older. However, this was not the case as I was in and out of the hospital during middle school, high school and college. I spent about a year in the hospital when I was 18 and 19 where both kidneys were removed; I was put on dialysis and received a kidney transplant in 2002.
I got through all of this with the support of my parents however I did not know of the PKD Foundation. Nor did I know that there were so many others out there living with PKD. I was unaware that support groups and chapters existed. I felt alone and different.
I am hoping to play a small part in helping those affected with PKD to not feel alone and different. Also, assist in providing an outlet to connect with others their age. I would like to give back what I was not aware of and did not have growing up with PKD. My hope is that this blog will be an inspirational place to go when one is seeking a positive environment to meet others with PKD, to share ones story, to ask questions and to make life long friendships.
I believe it takes PKD (Positivity – Knowledge – Determination) to ENDPKD.