We’re excited to feature our new ARPKD Patient Handbook as a resource for both parents of children with ARPKD and older ARPKD patients who are interested in learning specific information about their disease. We recently reached out to Michele Karl, ARPKD parent and Co-Coordinator for the PKD Parents Chapter, to hear how the handbook has helped her in her family’s journey:
When my sons were diagnosed with autosomal recessive polycystic kidney disease (ARPKD) over 12 years ago, I felt so lost, especially when all the pediatric nephrologist could do was hand me an outdated pamphlet. Going home from that first doctors visit and looking online, I was faced with many grim stories and misinformation about the disease. Since then, I have spent much of my time doing research and talking to doctors about ARPKD. Sadly, good information is rare and not easily accessible for parents. When I found out that the PKD Foundation was going to make an ARPKD handbook, I was thrilled. To think that newly diagnosed families would have more information than I was given was so exciting!
Having children with a rare disease is overwhelming and can also be extremely isolating. Not having resources only makes the isolation even more extreme. The ARPKD Patient Handbook opens up a whole new world for parents of children with ARPKD. For newly diagnosed families of moms who are pregnant or have newborns, it explains what the first steps are and should be. Sadly, there are still so many doctors who do not have enough information on ARPKD. For families to be able to access the handbook and share it with their doctors is amazing. Often, the first week and first month of life are critical periods for babies with ARPKD. Many doctors don’t know what to do at this point, leaving many parents scared and alone with their decisions. The ARPKD Patient Handbook is a resource that can help open more doors for these children as to what the next steps should be. For newly diagnosed families of older children with ARPKD, the handbook provides helpful information and terms to help them learn to cope with their “new normal.”
As the Co-Coordinator of the PKD Foundation’s PKD Parents Chapter, I get many emails and texts from families who are either pregnant with a child suspected to have ARPKD or with a child who has recently been diagnosed. It is so exciting to now be able to offer these families the ARPKD Patient Handbook. There is so much information to access in the handbook and it is written in a way that parents can understand. I am excited to give a copy to my 18-year-old son with ARPKD who is going away to college in a few weeks. I think it will be good for him to review the glossary of terms. Also, if he needs to see a doctor while at school, he can take the handbook with him.
I am so grateful that the PKD Foundation worked tirelessly to get this handbook made. What an amazing resource for families with children with ARPKD and for young adults living with the disease!
Interested in learning more about our ARPKD Handbook? Order your digital or printed copy from our website today!