JOURNEYS WITH ITP

SUSAN'S ITP JOURNEY

My daughter Emily was diagnosed in 2005 at the age of 7.   For months I knew something was wrong, Emily was covered in bruises.   The doctors kept saying she was “just a kid” and kids bruise.  Then she started bruising on her face and that’s when I pushed the docs for further testing.  Scariest phone call of my life was when the pediatrician called at 9:30pm and said that I need to take Emily to Lutheran General first thing in the morning and to “be careful”.  Her platelet count was only 7k.

In the past 12 years Emily has been through about all the treatments there are.  Steroids being the worst.  There is a reason they refer to ITP as a “roller coaster”.  Over the years she’s had periods of great numbers and times where she was stuck in the single digits.

Emily was very fortunate to get involved with the PDSA and was lucky enough to attend 2 of their annual conferences.  There she was able to meet some lifelong friends who shared her situation.  8 years ago we attended the first Pump It Up For Platelets in Oconomowoc, WI.  It was a great event and our entire “Team Emily” family attended all 3 years.  Trish and I were determined to bring a walk to IL and in 2014 we hosted our 1st Pump It Up For Platelets in Vernon Hills, IL.   Since then the walk has continued to grow.  Along the way we’ve met amazing friends and even recruited Jen to help us organize the event.

While Emily is now a “grown-up” at the age of 19 it doesn’t mean that she still doesn’t struggle with her numbers (currently hovering in the 20s) and it sure doesn’t mean that Mama Bear stops worrying.

Please come out to support Emily, Trish, Caden and all the other ITP Warriors out there.

TRISH'S ITP JOURNEY

When I was diagnosed in 2002, there was so little information available about ITP - much less a support group. By a stroke of luck, after what seemed like endless internet searches, I stumbled across a website called "ITP People."

This site was a beacon of light for me. ITP People was the beginning of what we now know as the Platelet Disorder Support Association (PDSA). This little website and all of the wonderful people I 'met' through it inspired me. I was determined to make sure that others knew about ITP and raise as much awareness as possible. When the opportunity arose to start a local support group - with real, live people - I was all over it! I knew how valuable that would have been to me when I was first diagnosed with ITP.

I wanted to start giving back to PDSA a lot sooner than we did in our area, but didn't have anyone willing to commit to helping until my co-organizers Susan and Emily came along. We also got advice from our neighbors to the north, Wisconsin ITP Support, which had their own events in the past. All of the pieces finally fell into place, and I really hope that our event continues to grow in years to come.

 

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