When I think back to my PKD cyst bleed episodes in middle school and high school, I realize I did not talk to many people about what was happening to me. My parents, doctors and school nurse were the ones aware of my condition. If I were to talk on a personal level of what I was enduring, it would be with my parents. I don’t recall talking much to my closest friends about what I was going through. It seemed to be a separate part of my life. I did not know any other person battling PKD, except my family members.
My mom did not talk much to others about our family disease. This makes me wonder if many do not know what PKD is because it is hereditary. If someone has cancer, the news spreads quickly through the family and on to their friends. It seems quite different with PKD. Is it because (minus the spontaneous mutation patients) we have people in our family battling the same disease? Our family members walk in our shoes and can provide a certain level of support and guidance, which leads us to refrain from reaching out much beyond them.
Technology has changed quite a bit since my transplant almost 13 years ago. I did not have the Internet to find information about PKD and transplant support groups. Today, there is a lot more communication and support online as well as through local PKD Foundation Chapters. For those of us who are a part of a local Chapter and online support groups, it seems like there are a lot of people talking about PKD. However, when I share my story at events and hardly anyone knows what PKD is, or someone has a puzzled look on their face when I say PKD, I continue to wonder why. Polycystic kidney disease is one of the most common, life-threatening genetic diseases. It affects thousands in America and millions worldwide – and yet, many people have never heard of it. Is it because PKD is a family disease?
When I learned of the PKD Foundation in 2004 and founded the South Central PA Chapter of the PKD Foundation, I entered a whole new realm of support and learned there were so many PKD families in my community and around the world. Families who broadened my hope, positivity, knowledge and determination. Meeting them and volunteering for the PKD Foundation fueled my passion to not let anyone else battle PKD alone. The family part of my disease has grown immensely and I am grateful for each and every one of you.
Why do you think many people do not know what PKD is? How can we change this? If you tend to be a quiet PKD patient, would you be willing to share why?
Since I was diagnosed in 1999, I have been educating people about PKD. In my case, my paternal grandfather had PKD (we assume spontaneously generated). My dad suffered from hypertension from his teenage years and died of a massive heart attack when he was 41. Before his death, I heard him telling my grandmother (his mom) that he had pain and blood in his urine, but he died before getting to the doctor. Grandmother died–and not one of them ever told us kids about the PKD. Only my older half-sister knew, and she never told us either. So, even though there was PKD in the family, I didn’t know.
Now my half-sister, my brother, and I have all been diagnosed with PKD. My younger sister does not have it. Both of my children have PKD; it has truly become a family disease for us. I’m on dialysis and waiting for a transplant. My children are in early stages. My son is in denial; my daughter is very pro-active. She discovered she had PKD during National Kidney Month when she choose to get tested and an ultrasound. She has also been educating others about PKD. She and I work together both educating others and raising money for the PKD Foundation.
For us, not being secretive about the disease (as my father and grandmother were) is important, as well as encouraging people to be screened for all types of kidney disease.
Your family story is very interesting and definitely one we can all learn from. Thank you very much for sharing your family tree of PKD. Amazing how it was kept so quiet. I commend you for speaking up about PKD and for your advocacy. I wish you and your family the best. I hope you receive the gift of life very soon.
Hey Valen
I could not agree more! I wish I had a dollar for every time someone said “What s that?” when I talk about my daughter and PKD! I would donate those dollars to the foundation of course!
It s so exciting to be the walk coordinator for the new Western NY Chapter. Bring about that awareness-so cool.
Thanks-love your stories as always!
Hi Maureen,
That is great! Thank you for being the walk coordinator for the new NY Chapter. It is such a great feeling the day of the walk when you see what you helped to accomplish for the cause. I organized walks in PA for three years and loved it! Good luck! So happy you love my stories. Thank you for your support. Hugs!
I don’t talk about it because it’s too complicated to discuss quickly. Besides being a mostly invisible disease, the general public knows very little about CKD, let alone PKD. Too often there are tons of questions, like, why can’t you take a pill, why don’t you have surgery, why don’t you go on the renal diet now , etc. Also, PKD doesn’t progress in a logical way to the layman. And because genetics is a fairly new science (as far as sciences go), people know very little about dominant and recessive, chromosomes, etc, therefore, do not understand why treating it and finding a cure are so difficult. Bottom line, there is no short conversation about PKD. However, I do not feel PKDCure does enough to promote awareness. As they have stated, their focus is research, which is unfortunate in my opinion because there are a lot of research dollars coming from NIH already, and as the largest advocacy group, they have the audience to change public awareness. I feel PKDCure could spend a little more on awareness every year and it would make a bif difference.
Thank you very much for sharing your thoughts. After reading your comment, I thought of you as soon as I read a sentence in Jordan’s comment below. One of the sentences reads, “The more I tell people the easier it is to talk about.” I hope you will find this as you continue on your journey. Thanks again for your comment.
Unfortunately it is such an unknown disease. When my daughter was diagnosed 8 years ago I can tell you that even as a registered nurse when I heard the doctor say she had PKD I had never heard of it! We made it our job to educate ourselves and found a clinical trial in CO so we could work towards a cure. Our local news media even did a story on her when she went to CO; in an effort to bring awareness. I went every year to her school and sat down and educated the teachers, guidance counselors, and school nurse on what PKD was and about her health because..they had never heard about it either. To her friends / coaches/ some family…she is the kid with the “kidney thing”. It is a family thing but its our job to help bring awareness to PKD…that job kinda comes along with the diagnosis.
Hi Marta,
Beautifully said. Thank you for sharing all that you do to spread awareness. Your last two sentences really spoke to me. I’m sure I was considered the kid with the “kidney thing.” Also, I too feel that it is my job to help bring awareness to PKD. Thanks for sharing your wisdom. I wish you and your daughter the best!
I have several ideas actually. My grandmother, my Mom’s Mom ( my Mom also has Pkd but didn’t know it until just before her 70th birthday) died from a brain anueryism when she was 35. Technology then was nowhere close to what it is now but how many others went undiagnosed? This being a family disease it makes me wonder if some earlier families weren’t ashamed? Now
a days unless you know some one you don’t hear this disease talked about! I have eight siblings. I’m the only one diagnosed right now. They don’t want to hear about it unless it affects them directly! And doctors? That’s a whole different story. If we choose to believe it or not there seems to be a stigma attached to PKD.
Elizabeth, I would like to know how PKD carries a stigma, and in what ways. I often wondered about this myself.
Hi Elizabeth,
Thank you for sharing your family history and thoughts on this topic. I’m curious, like Jan, about your thoughts on PKD carrying a stigma.
Because I am living in a country where the people and the government even don’t care what PKD is. And the kidney doctor I met said “Just work hard to saving money as long as you are healthy, and in 10 years you will get dialysis.”
Hilda,
It makes me so sad to hear that you live in a country that treats you and PKD in this manner. I wish I could help change that. Wishing you the best as your navigate your path with PKD.
i talk about my disease ALL THE TIME! I’m a hair dresser and have been diagnosed for 12 years. I’m 27 now. Usually I have some sort of PKD stuff on my station, wearing jewelry, or have pictures from PKD events. The more I tell people the easier it is to talk about. And most people genuinely care. Even a few clients have volunteered to be donors. When they say that I usually suggest donor circles. That’s a whole other can of worms but it’s really made me knowledgeable AND I hope I’m educating others in the process.
Hi Jordan,
Thank you very much for sharing how you talk about PKD with others. I love your comment, “The more I tell people the easier it is to talk about.” I completely agree with this and it is very important for others to hear. Great job helping to raise awareness!
Although it was my husband and his family who have PKD, I remember even his own Mother did not talk about the disease. He thus had no knowledge of what PKD entailed until he was diagnosed at age 28. There are very few in his family who do not have PKD, just two that I am aware of. When talking about PKD with his Mom one day I asked her why she had never discussed PKD with him and his brother. She said that “How can you tell your kids that you have a problem that you could die from.” Perhaps so many do not know of PKD for just that reason. End Stage disease of any type is difficult to share.
Hi Kay,
Thank you so much for sharing this personal family story. A very valid point that I definitely agree with. Hugs to you and your family!
I just had a loved one diagnosed with PKD; he is 12 years old. I started getting a Race for PKD ready, looking to buy bracelets, etc. Then it occurred to me that this would put my grandson out in the public eye. He is asymptomatic at this point and his PKD was an incidental finding when he was sick with a severe virus. At this point, he knows he has kidney disease and that he “can’t eat salt or bananas.” I was going to pass out bracelets and cards with a description of the disease and realized I don’t want my grandson, at this age, to read a card or hear the words that he has “a genetic life threatening illness with no treatment or cure.” In my case, my big concern right now is for my grandson to have a normal childhood without fear of what might or might not be in his case. His appears to have been a spontaneous mutation. I want to get the word out but I don’t want to alarm children with this illness.
Hi Jan,
I can appreciate you being cautious with this and wanting to make sure that your grandchild is comfortable with PKD first before letting everyone else know about it. These types of situations are very personal and the timing depends on the individuals and the family as a whole. I commend you for your interest in wanting to help educate others about PKD yet being cautious to put your grandson first. I say follow your heart and take it a day at a time. Nobody can tell you what is right except yourself. Big hugs!
I was the first diagnosed person in my family with PKD, but my father died of what looking back were probably PKD related symptoms. I think each of us has the responsibility to get the word out about PKD. My son was 4 when I was diagnosed, and we have never hid PKD from him. He has walked in every walk with us, and in 8th grade did a huge health paper on PKD that he presented to his whole class. He knows he has a 50/50 chance of having PKD, and I would rather he be informed. I have been to Congress several times to lobby for kidney related issues, and educate our Representatives about PKD. We can each do our part. Even 40 years ago, I think cancer was more hidden and less talked about, but now that more people are fighting and surviving there is less stigma attached. I think if we all as a PKD community continue to educate others, we will see an increasing awareness of PKD.
Hi Liz,
I appreciate you sharing this powerful and inspirational comment encouraging all of us to speak up about our PKD! I admire your strength as a PKD fighter and a mother. Thank you for all you do to not only help your family but all PKD families. Hugs!
I am the one in my family who was the spontaneous mutation. Both parents and all siblings were screened with ultrasounds and were negative. Out of three children, only one has been diagnosed with PKD. There is a stigma to PKD. Even though I’ve lived for 30 years since I was diagnosed, neither my children nor myself can get insurance. (Life insurance or supplemental health insurance.) My children are limited to certain professions if they reveal they have a family history of PKD. (for example a military career is out) My immediate family is educated about the disease, but I understand completely why people want to keep their health history private.
Hi Ruth,
Thank you very much for sharing your personal history and what your family endures because of PKD! Hugs!
I agree with several of you in that there is a certain stigma associated with PKD. The main one being “how can you have kids when you have this disease?” Well, some of us did not know the disease even existed in the family or even in the mother to be until much after! My dad died at 39 when I was 9. I was told he was just sick.
I inherited it and was diagnosed 5 years ago when out twins turned 10. The kids know about PKD. I did a lot of “research” with my mom before she died 2 years ago. She finally “confessed” she knew all about the PKD in my dad’s family but was too afraid to talk about it. I forgave her. I guess fear is a terrible thing!
Thank you for your blog:)
Hi Karin,
Wow, thank you for sharing your family story of PKD. I’m so sorry you lost your father so young and that your mom bottled PKD up for so long. I’m thankful she finally talked to you about it. Everyone handles things in life differently. We can definitely learn from others. Thank you for reading my blog and sharing your personal path with PKD. I wish you and your family all the best. Hugs!
Hi Valen,
Thank YOU for your compassion and kindness! Even with an ever caring and supportive family, at times, we, PKD sufferers are best understood by another one who is walking in similar shoes.
Best,
Karin
Hi Karin,
It is my pleasure and an honor to be able to share my story and connect with wonderful people like you! So beautifully said and I couldn’t agree with you more. We PKD warriors are kindred spirits. 🙂
Valen,
In 1964 my father was hospitalized for the last time with uremia associated with PKD. His physician came into the room and told me that I was fortunate. According to him, it had been discovered that PKD only ran in a series of five and since my father was the fifth in his family to have it, I would never need to worry. Really? Since that time my three siblings and I, as well as many of our offspring, have been diagnosed with PKD. It seems that we have come a long way in understanding this condition. With more research and community awareness, we are on track for a treatment and eventual cure.
Keep up the good work.
Ann
Hi Ann,
Thank you for sharing your story. I am sorry that you were given this false information, but your story is a great example of how far we have come and that we are on the right track towards a treatment and cure. Thank you for your support!