I was in my early 20s when I first typed “PKD” in Google’s search engine. That was 12 years ago this month. I was so excited to discover the PKD Foundation. I immediately contacted the Chapter Relations Manager and shortly thereafter created the South Central PA Chapter. The rest was history.
When I was diagnosed at 10, I didn’t know the PKD Foundation existed. Nobody gave me brochures on what PKD was, or connected me with anyone else battling the disease. I felt like I was the only one in the world with PKD, and all the information I learned came from my doctor. I don’t remember talking much about PKD when I was growing up because I wasn’t that educated about it. What I knew was what I personally experienced: cyst ruptures and the excruciating pain and symptoms that came along with these episodes.
While growing up, we didn’t have the Internet to search for more information on PKD. My, how times have changed! Now we can seek answers online, through support pages, Facebook, the PKD Foundation website and most recently, the PKD Patient Handbook.
If you have been diagnosed with PKD, it is natural to want to learn as much as possible quickly. The unknowns are scary and education can ease some concerns. The PKD Patient Handbook provides a wealth of information about autosomal dominant polycystic kidney disease (ADPKD). It is useful to those who have the disease, those who are at risk based on family history, and to family members and friends of loved ones who have PKD.
Some of the information you’ll find in the handbook include:
- What is PKD?
- Signs and symptoms
- Diagnostic tests
- Problems associated with PKD
- How to care for yourself
- What to know about kidneys
- Stages of chronic kidney disease
- PKD and children
- PKD genetics
I am passionate about sharing my journey, providing education and support so that others do not feel alone like I did when I was diagnosed. We are surrounded with a lot of valuable information and great support. The more you know, the better you can care for yourself. Let’s get educated and empowered!
In honor of National Kidney Month, today’s PKD Challenge #17 is to order the PKD Patient Handbook, a free resource from the PKD Foundation. Order your copy today!
How does education empower you?
Valen you are so right! Knowledge is power. I have the handbook and have shared with family and friends. It is a wealth of information. As you know I am trying to start a PKD Chapter in Reno, NV and Northern Nevada so I too can empower people to learn all about PKD.
I am so excited for you, Cathy! Good luck with starting a chapter in Reno. You are perfect for that role! 🙂 Hopefully our chapters can join together for events! Hugs!
I totally agree. Although I regretted dropping out of the Tolvaptan/PKD study, due to troublesome side effects, I continue to be optimistic about upcoming studies I will participate in. I have an excellent nephrologist as well, which is of extreme importance for regular monitoring and knowledge.
I have United Healthcare Insurance and have regular telephonic contact with an RN, who also provides additional resources. Subscribing to the PKD Foundation website is a tremendous plus, especially the posts by you, Valen!
Aww, it means so much to know you enjoy my posts! Thank you Linda! I appreciate you sharing the important and valuable ways you are taking the best care of yourself, through studies, nephrologist appointments and seeking other avenues for additional resources. Great job!!! 🙂
Some might say that ignorance is a bliss but I will disagree. The more we know about our condition, the better we can take care of ourselves. For instance, being aware of what foods and lifestyle changes are conductive to having healthier days is important information. However, I digged in to learn about it on my own way before I was able to find my amazing nephrologist. By the way, I also found him by doing my own research.
To me, nothing is scarier than not knowing enough.
This one was another important topic, Valen! As always, you are right on! Thank you!!
I completely agree, Karin, thank you for sharing. We can’t expect the information to find us, we must go find it as our health depends on it! 🙂 xo