Wednesday, December 11, 2013
The PKD Foundation's website is such a great tool and is the source of many of my blogs. There's information about the disease itself, research being done, news about and from the PKD Foundation, where to look for doctors, how you can volunteer etc. As a chapter coordinator I try and go to the website several times a week just to navigate around the site and make sure I'm up to date and turning out great news from the foundation to the Atlanta chapter.
I may not be able to surf the entire website each time but I always make sure I read "Voices of PKD," which is always so inspiring! The featured story currently on "Voices of PKD" is about a young girl named Kerilyn.
Kerilyn was diagnosed with PKD at age 13. Her story talks about the abrupt changes she had to mak in her lifestyle. She no longer could do what "normal" teens do at age 13. Mostly she no longer could play the sports she so dearly loved. Kerilyn decided to make the most of her situation and as you read her story, you'll learn about a young lady who made great choices and decisions after being diagnosed!
A youth with PKD faces different challenges than an adult with PKD. Living with PKD as a teen makes those challenges even more difficult. I urge young people with PKD to read Kerilyn's story and reach out to their peers through the foundation. They will find life long friends who understand and support you and you'll do the same for them!
I don't know Kerilyn but after reading her story, I was so proud of her.
Click here to read Kerilyn's Story.
To find people to connect with, please contact the PKD Foundation at 1.800.pkdcure or visit the website at:
PKD Foundation-Atlanta Chapter Coordinator
Tuesday, September 24, 2013
Today a family member was told she has Polycystic Kidney Disease. Today I knew her life would become very different. Today I even knew she would take it like a champ and believe there will be a treatment and/or cure in her lifetime. Today I knew I couldn’t ever stop fighting for a cure or treatment.
As PKD patients who have children, we pray everyday that they won’t have it. We pray the 50% chance is wrong. We pray they will beat the odds. Until we find out they didn’t. Then the prayers and the hopes take a turn. They turn to science, doctors, nurses, research and miracles.
The disease doesn’t discriminate. It doesn’t choose a specific culture, gender, ethnicity or age. So when we get the news that our son’s, daughter’s or grandchildren have been diagnosed, our hearts sink. We realize that our prayers weren’t answered. But as we did when we found out that we had PKD, we pick ourselves up after the initial shock. The only difference is instead of being the learners; we now become teachers. We teach them how to be courageous, strong and hopeful. We educate them on all we know and how to find out the things we don’t. We do everything in our power to make them feel better.
So yes, today I call on all to UNITE TO FIGHT and walk for PKD. If you can’t walk, donate. If you can’t donate, educate. Tell your friends and families about this disease that robs people’s lives of innocence, childhood, health and longevity. Tell them we need them to pay attention.
This year’s walk in the Atlanta metro area is in downtown Duluth on Oct. 12 at 9:00 am. For more information please go to:
PKD Foundation -Atlanta Chapter