When you think of PKD, what do you picture in your mind? Is it the image with a normal-sized kidney in comparison to the football-sized PKD kidney polluted with cysts? Is it the unknown of what your future may hold for you while living with this disease? Or is it the concern for your family members who are affected with PKD? How about the relatives you have lost? Do you think of the hopeful day when a treatment and cure is found?
In honor of World Kidney Day and National Kidney Month, I would love if you would join me in an exciting social media campaign that I am working on with University Kidney Research Organization (UKRO). I am a national spokesperson for UKRO whose mission is fundraising to support medical research and education related to the causes, treatment, and eradication of all forms of kidney disease. On September 19, 2012, USC Keck School of Medicine and UKRO announced the establishment of the USC/UKRO Kidney Research Center (KRC). The Center aspires to be a premier center nationally for kidney research.
The initiative that me and UKRO are working on today and throughout the entire National Kidney Month is to put a face to kidney disease. We are living with one of the most common life threatening genetic diseases and when I say “PKD” to people, so many of them do not know what it means. I believe together we will change this. I have been delighted to see how many of you are speaking out and sharing your story through this blog. We all know someone fighting PKD and waiting for a transplant, a research breakthrough, and a much-needed cure. It is hard for me to wrap my mind around the figure of millions people worldwide who suffer from polycystic kidney disease. When I look at pictures of my grandmother who passed away at the age of 53 before I was born, my aunt who died when I was 15, my mom who is 56 and doing well with her original kidneys, my 36-year-old brother who is healthy with his original kidneys, and my dear 11-year-old nephew who has PKD, then it really hits home. Also, when I see other families battling this disease, I am given a personal connection that really pulls on the heartstrings. This is real and together we need to fight for our cause.
It would mean so much to me if you would join me in sharing pictures of yourself and your loved ones who are living with PKD by being a part of our special ‘Faces of Kidney Disease Image Wall,’ showing the diverse group of people fighting PKD. For details on how to take part in this simple yet powerful event, and to learn more of the other initiatives with this campaign, please visit: http://ukrocharity.org/events/on-world-kidney-day-2013-put-a-face-to-kidney-disease/
My goal has always been to share my triumph over adversity and put a positive face on PKD. I want people to not only see the ugly picture of what our PKD kidneys look like, but to see our beautiful faces who are living with those kidneys inside us. It allows others to make the connection of all of us who live with PKD and how we are the ones that need their support to find a treatment and cure.
When I think of PKD, what do I picture in my mind? I picture the millions of people worldwide that need support. I picture the departed loved ones that I have never met because of this disease. I think of my nephew and future generations who I hope will never have to endure the full effects of PKD. I picture hope, positivity, a treatment and a cure found. I hope you will join me in embracing PKD and be proud to share your photos to help make our ‘Faces of Kidney Disease Image Wall’ a powerful tool to help in the fight to end PKD.
Happy World Kidney Day my PKD family! I hope you are joining me today for PKD Challenge Day #14 and wearing a PKD t-shirt!
I want to help! This is amazing! Everyone needs to see the difference between assumptions and reality.
Thank you SO much Christy!!! I couldn’t agree more! Let me know if you have any questions when you read over the info on UKRO’s website! xoxo
I’m Kayla I’m 19 an I have pkd it is scary and I understand you and I want to get more people knowing about this disease
Hi Kayla,
Thank you for the message! I appreciate your interest in wanting to get more people to know about the disease too. Like you, I was young when dealing with PKD. I was diagnosed at 10 and actually had my transplant at 19. I am now 30. I hope your health is doing well and that you are feeling well. Take good care and I hope you are enjoying my blog.
Where can I get tshirt?
Hi Maggi,
The PKD Foundation is working on creating an online store where we will soon be able to purchase the END PKD t-shirts. 🙂 Their website is http://www.pkdfoundation.staging.wpengine.com
I’m 53 years old and was diagnosed when I was 19. It came from my father’s side of the family, but skipped him. I have 3 sisters that don’t have it and two adult children that don’t have it so far. I had both kidneys removed and donated when I was 40. I did hemodialysis and peritoneal dialysis for 2 years until my cousin gave me her kidney. I just celebrated 12 years but I’m listed for another kidney. I have 25% function so I don’t need dialysis yet. I also have a cousin who has it but has had two transplants.
Hi Marie,
Thank you for sharing your family history. It is not too often that I hear a family like yours where so many of you do not have PKD. That is wonderful to hear. 12 years is so great…congratulations. I hope your next transplant will be seamless in that you will not have to endure dialysis again. Wishing you all the best!
Does anyone know what the odds are that my daughter will have a child with PKD if she doesn’t have PDK? Thanks.
Hi Marie,
PKD doesn’t skip generations. A person with PKD has a 50 percent chance of passing it on to each of their children. Children who do not inherit the disease would have no chance of passing it on to their children. So if your daughter does not have PKD, she will not pass the disease to her children. Thanks for reaching out and asking this question. I hope this helps! 🙂
I’ve been told that it doesn’t skip a generation but my dad doesn’t have it, nor did my aunt, who passed it to her daughter. Maybe my family should be studied! Thanks for the info.
Hi Marie,
I am intrigued by this and your family history. I talked to the PKD Foundation and they suggested that you email pkdcure@pkdcure.org and they can help connect you with someone and or answer your questions. If you decide to email them, please let me know what you find out, as I am now quite curious myself. Take good care.