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 

Happy New Year!

It's a New Year and as a PKD patient, I hold high hopes and dreams of finding better treatments and of course a cure for PKD.  In 2012 PKD patients had some great news. One in particular was the results from the Tolvaptan study.  The study shows that Tolvaptan does in fact slow down the growth of the cysts on our kidneys.

We learned that Drug Repurposing has become a huge part of research for the PKD Foundation.  With our continued fight for a cure through awareness and fundraising, I feel strong that one day soon great things will change this horrific disease affecting PKD patients and their loved ones. As I mentioned in my previous blog, my goal is to share with you anything from the PKD Foundation and any other resources I find.  Julia Roberts and Michelle Karl will also continue in their fight for a cure on the ARKPD side of this disease.  But please do not hesitate to post things on FaceBook and/or let me know in the comments section about things you've heard about or read.

To make things happen like drug repurposing and research, we have a lot of things to do as a chapter and a foundation this year! I am about to embark on the Cocktails for a Cure event and would love to have my volunteers from last year step up and anyone else who would like to become involved in this important fundraiser.  We want it to be bigger and better than last year and I believe whole heartily we can do it!  Let me know if you'd like to be a part by emailing me on FB or at atlantachapter@pkdcure.org.

Karyn Waxman in Memphis who created a very successful annual golf tournament has high hopes of finding a person in the Atlanta area who not only loves to play golf but would like to be involved with a golf tournament!  I can put that person in touch with her also.

Finally, the leadership conference is coming up at the end of February and I'd love to hear about some concerns, questions, ideas and opinions you may feel is important for me as the chapter leader to bring to the forefront at the meeting.  This is the best place for your ideas to be presented so DON'T BE SHY!

Again, Happy New Year and let's do great things together as a chapter and as people who have been affected by PKD far too long!

Marlene Stewart
Chapter Coordinator