Why I Fight for PKD

I know this blogs main goal is to provide information for our chapter but I as I've previous stated, I think it's a place to share our stories, our experiences and trials and tribulations. Today I would like to share about my personal trials and tribulations and why I fight for PKD.  

I am in Albuquerque New Mexico taking care of my sister in the hospital as she fights for her life.  Barbara has been on dialysis for 12+ years.  She's always had some difficulties that have made her struggles with PKD more intense than mine.  As we all know it is a very individual disease. Some do better than others.  She has experienced a lot of difficulties in her journey with PKD but she has also been one of the biggest fighters against this disease than anyone I've ever seen.  We all have our heroes don't we?

I came here on Sunday expecting to find her very ill physically and mentally.  However when she heard that my twin and I were coming to see her, she perked up right away.  Although her spirit is high and she has been eating better, I wish I could say she's getting better but she's not.  I wish it were that easy.  The doctor's have been really great with her care but there's only so much that can be done for her now. 

We all have times where we turn to our PKD family for support and understanding.  We know we are not alone.  We know that there are people who are experiencing some of the same things and it provides a calm for us.  It is for this reason most of all that I became a chapter coordinator and involved with PKD.  As we all know, 9 times out of 10 when we tell people that we have PKD, we get the "PKD what?" response.  It is for myself, my family, and for my PKD comrades that I take the opportunity to tell those people exactly what PKD is and how many people it affects.  In fact the other day, I received a call asking for a donation.  I told this person on the phone I would be glad to give them a donation but they had to listen to me about my foundation first.  I know,  a little quirky but I take the opportunity when I can to bring awareness.  This was in fact a charity I like to support but I desperately wanted them to know about my disease also and perhaps one day they would support ours. The person receiving my unsolicited lecture was somewhat annoyed at first but as I told her about our foundation she was truly interested in how she could participate in a walk and how to find one.  Will she do that walk? I can't say.  But now I have made her aware of PKD and the chances of her walking are far greater now than before.   

This is how my mind works now. This is how I fight for PKD every single day.  I take any moment I can to tell people about our "secret society."  I want to make it less and less a secret.  I wear my pins, I carry my cards,  I plead with them to go to the website and learn more about it.  I warn them the picture of a PKD kidney isn't pretty but I need them to be shocked.  

I know it's hard for some to talk about PKD and that too is a very individual decision but as a PKD patient I need to do this for myself and for my family and PKD friends.  I want to be that individual who says I made a difference in the fight for PKD.  I hope you do too.  

Marlene Stewart 
PKD Foundation - Atlanta Chapter Coordinator