As a grade school student, I often ended up in the nurse’s office due to excruciating kidney pain. After a role in a school play that called for me to have a pretend fainting scene, a cyst on my kidney ruptured and bled. I was always forced to sit on the sidelines in gym class for fear that any impact would burst a cyst on my enlarged kidneys. PKD made me different than my classmates. I didn’t know any other child with the same illness. I wish I had learned of the PKD Foundation sooner and would have known that I was not alone, because we’re better together.
I was thrilled to learn that there is a “PKD Teens” group at the PKD National Convention on June 20-22 in Kansas City, Missouri. My hope is that many from the youth community will attend and not feel alone like I did as a child. I have attended several Conventions where I have been fortunate to be a guest speaker, host a table to publicize my biography, gain invaluable information, and meet members of our PKD family.
For some it is hard to talk about PKD. There is the fear that others may treat us differently once it is known that we have an illness. The unknowns when first diagnosed are scary. It is difficult when enduring the different phases of PKD. Sometimes it may seem that the more you learn the more overwhelmed you may become. All of these emotions are real and understandable. Whether it is ourselves, our family members or loved ones, we should not go through this alone. Attending the Convention instantly exemplifies we are not alone. It is empowering to be surrounded by other PKD patients and their family members while learning how to cope with the disease, the latest in research and become an advocate for our health care. It can be a life changing experience.
Whether you are a PKD patient, caregiver, or family member, the PKD National Convention 2014 offers resources to support your needs.
You’ll learn how to:
– Navigate PKD for those recently diagnosed.
– Live with PKD and be proactive with your health.
– Prepare for advanced stages of PKD, including end-stage renal disease, dialysis and transplantation.
– Live your best life post-transplant.
– Manage PKD as a teen or young adult.
– Care for a child with ARPKD or ADPKD.
– Support a spouse or parent.
The stellar speaking cast includes my nephrologist when I lived on the east coast, Dr. Terry Watnick who is the Associate Professor of Medicine in the Division of Nephrology, University of Maryland. Dr. Watnick’s husband, Dr. Gregory G. Germino, will also be a speaker. Dr. Germino is the Deputy Director of the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK), part of the National Institutes of Health (NIH). What a dynamic duo! I had the privilege of speaking with them on several occasions when addressing medical students at Johns Hopkins University.
I greatly encourage you to partake in this fantastic event. I hope you will be able to go and meet all of the extraordinary members of our PKD family. Since sharing my story at the first PKD National Convention I attended, to continuing to share my story through this blog, I am a stronger person thanks to the support from all of you. It is the support and knowledge that we gain from each other that helps to keep us strong and fighting, because we’re better together.
Have you attended a previous Convention and/or are you going to this year’s Convention? Please share what you learned and took away from your experience.
To register and learn more about the PKD National Convention, please visit pkdcure.org/convention.